Thursday, November 10, 2011

But, still

Even putting my own health issues aside this week has been HARD.
Wash is not adjusting to his meds as he is expected to. He is getting even more depressed; earlier this week he broke down sobbing and told me it was just the same as if he was dead and it might as well "be over with now". That was beyond disturbing to me and I know it was painful for him to go through.
He is also growing quicker to anger and having a much harder time keeping his temper down. He seems to me to not notice when it happens, when it starts to get to be too much for him and he just BUILDS up until it pours down on me. Now, my mum also asked him about this and he told her he IS aware of it, to a degree, but not enough that he feels he has control when he looses his emotional stability.
What this means is that for the past almost two weeks usually once a day, sometimes more less often less, he just gets ANGRY and yells at me, menaces, threatens, and sometimes begins to get a bit physical. This is for me, way too similar to how he acted when the tumor was crushing his brain.
Except that from his last MRI we know there is NO tumor right now.
His seizures are still happening, though I do think they are less often right now. He goes back to all his doctors next week. His Neuro-Onc visits run up to $760 per visit. We've been three times in 8 weeks. Here is where I sigh.

The other option they had brought up was possible pressure inside his head. I'm guessing that there is more to determining this than an EEG, but we'll just have to wait on the doctor to see.

This has all boiled up to Wash's Perfect Storm.
Right now he's mostly pissed at me for "keeping him in". (Loose bed/house rest). Right now his body no longer gives him a warning when he is going to physically pass out anymore (whereas he used to feel a 30-60 min 'heads up') and that's a big frakking danger. It's also colder so I don't like him spending too much outside where his body temp can be lowered- he cannot regulate or feel temperature accurately, so he doesn't realize how hot or cold he is really getting until it is dangerous to his body and health. So we have not gone out as much as we would have the past couple weeks. Wash is none to happy of this.
I have done my best to explain to him the WHY, but he feels and only remembers that is it something he "can't", not the WHY.

Here is where we come into his asshole of a therapist. This being the same guy who upon knowing a half session with me 2 sessions later accused me of abuse to Wash. (I refused to shake his hand the first session. I have Asperger's and he said to me- the frakking therapist- that OCD was an "excuse" and he did not believe it existed) I do not like Mr Wink-Texas. Wash LOVES him, as his therapist validates EVERYTHING he says and tells him all that he wants to hear. A few weeks ago after a session Wash comes to me and says (This is after we both notice his seizures going again) "Mr Texas says I'm not driving to keep you in control, I want to drive again!"
So he yelled at me for a few hours about how it was not fair, he could still drive, he still had his license.... while I tried to wait him out and explain that he was partially blind in one eye and had uncontrolled seizures and fatigue disorder. I would not accept responsibility if he hit someone and as his caregiver I already had that risk, so unless he was willing to separate from me, no driving.
This week, I was almost holding my breath waiting to see what the quack would tell him. It is obvious this guy has never even glanced at Wash's medical files. It's all clearly on there. Even his mental report that we had done with tests back in January.
So, after a personal disturbance in the parking lot (later) Wash's new hangup for this week was that "Mr. Texas said I need alone time or space. So he said I should walk down to the park for a few hours and be alone!"
Wow. This therapist wants to frakking kill my husband or something.
He has memory issues! I can hope he would make it the 4 blocks to the park safely, but right now that cannot be trusted. He says be alone for a few hours.... in a deserted park. Awesome! So no one is there to notice when he has a seizure, or goes into shock when he "forgets" to put his jacket on for 3 hours and starts to freeze since his own body cannot keep him warm. Or, better, keep him alone so if he does wander I'll have the whole neighbourhood to have the cops canvas looking for someone.
He says that since the last time he had a seizure out of the home without me (grand mal on the day before my 23rd birthday) and got home "safe" he'd be FINE.
Guess he does not recall he was passed out in the middle of the street for at least 15 minutes before a family came down it and thankfully did not hit him with their car, but brought him back to the address on his ID card. He says he gave the address, but I recall when he was brought to my door he was limp, weak, incoherent, and had a slight palsy on half his face.
So, my stance on him going out alone for hours?
Like hell, and over my non-caregiving body.

I guess he brought it up to my mum at Taco Dinner and she agreed with me right off and tried to kindly explain to him why she agreed. We'll see.

We also heard last night one of Wash's great aunt's (who he and I were both close to) passed away. She was ill for a bit, so it was not unexpected, but I know it hurts him deeply, he loved his aunt dearly. She also worked real hard to understand and pronounce my name right. I'm not sure if he remembers being told this last night. I am not going to bring it up. He has had too much bad news and heart aches this week.

We're still alive, still barely holding on, but here.
I just wish I had more joy to give him. I give up my own for him, and it's not enough. I miss seeing him smile.


  1. Seizures and driving do not mix under any circumstances. In California you have to get approval from the DMV (including a form for your dr to fill out) before you can get your license back.

    A guy in Los Gatos had a seizure behind the wheel and hit and killed someone on the sidewalk. Turned out he'd been having monthly seizures. He's now in jail for 10 years for vehicular manslaughter.

    You're 100% right not to let Wash drive.

  2. #1) I TOTALLY agree with grahamwest, (Above), about the danger of Wash's driving, Tashi, i.e., because of Wash's (apparent continuing nighttime) seizure activity; because of Wash's partial blindness in one eye, and also because of Wash's extreme fatigue disorder, in which he can quite suddenly----(without ANY warning!)----pass out.

    Two years ago, despite my VERY STRONG objections, my (*significantly* visually-impaired) 83-year-old Dad continued to drive with SURGICALLY-READY cataracts in both eyes. Preoperatively, my Dad's Ophthalmic Surgeon had said ABSOLUTELY *NOTHING* to him----(i.e., one-way-or-the-other)----about whether my Dad could, or should not, continue to drive (!!) And many people, as you know, *WILL NOT ASK* their doctor themselves............ (i.e., in kind of a "Don't Ask - Don't Tell!!" way).

    My Dad then recklessly proceeded to rear-end #2 different parked vehicles, in #2 different towns, before my three (nearby, directly-"caregiving") siblings *F.I.N.A.L.L.Y.* faced FACTS and documented (Vision Testing, With Glasses On) REALITY; and said, "Enough!!"............ and BEFORE, (*thank Heavens*!!), my Dad literally KILLED, or seriously INJURED, a completely innocent person(s) on the highway. (There's an agonizingly-lot-more to the story than this, but these are just the very bare basics).

    #2) The other things that you might want to discuss very frankly/openly WITH Wash's Neuro-Oncologist next week is how Wash "sometimes begins to get a bit physical" with you, Tashi; and also how to BEST *B.A.L.A.N.C.E.* Wash's needs for "alone time or space" WITH A) His current cognitive/emotional status; and B) His current physical strength/stamina/body-temperature-regulation status.

    Maybe Wash's Neuro-Oncologist............ i.e., since she, (of all of Wash's different Specialists), is his *L.E.A.D.* Specialist............ could somehow (??) STRONGLY communicate to Wash's therapist EXACTLY what Wash currently *should*, (and *should not*), BE doing and/or PLAN to do, activity-wise............ with appropriate, periodic UPDATES to Wash's therapist, too, i.e., as Wash's condition changes/fluctuates.

    (I'm sure that Wash's Neuro-Oncologist and his therapist also consider THEIR Professional Liability............ i.e., in *i.n.s.u.r.i.n.g.* the SAFE Postoperative Course OF all their current cancer patients/clients, too).

    #3) Anyway, these are just some of my (very, very general) thoughts, which I sincerely hope might help you a little bit, Tashi. Jack and I warmly think of, (and fervently pray for), you & Wash every single day.