Compound Stresses, and Is it Dementia or Something Else?

I haven't cracked yet...been too exhausted, stunned by the surrealness of it all, and too busy. My Dad is flying here for his 70th bash rather than staying home, so we don't have to travel and further disorient Gary. My sisters will be here, too, the first week of September...right after this whole move back up and the doctors start getting really involved and hopefully start helping us. Between this and Sami moving to Ohio (missed her terribly and slept on alert for texts and phone calls when she was back there for her entire Junior year, and because she's been a Type 1 diabetic since 10/09).

I just haven't had time or space to recover from any of these medical challenges/emotional traumas at all since the whole avalanche began with Gary's embolism in 12/07. It's been a complete freakish reality since then. My Dad and youngest sister are both ready with their shoulders in 3 weeks...may need a rubber room when I see them...especially my Dad. We have become so close since I moved with his help to Ohio. 2009: Moving away from there tore me up. My 4 day drive from Ohio to Arizona for my new job was first day full of tears...next 3 days of driving=therapy to separate with distance and mental preparation to work after 9 months of rejection. Then a month later, 10/09 Sami was diagnosed. I was internally guilty of not being there and Gary felt at fault because he was in charge while I had been gone for 2 months and it was on his watch... NOT allowed to crack yet...not ready...not time.

Now my anger is driving this move...after the move settles is when the family arrives. I will probably allow a small crack, but will not allow enough to take me out...I have to reserve my strength to advocate. Gary's getting completely run over by the system, and I have to fight to get him accepted by the VA, and have the doctors take this rapid change seriously. This is being blown off as dementia, when he has all the symptoms of Normal Pressure Hydrocephalus. His ventricles in his brain are swollen. The cursory spinal fluid flow test in April was negative, but I've read several studies that say that test is the old way to diagnose and isn't reliable.

Fast forward to last week! He has double vision...went to a medical eye doctor, and he has 6th Nerve Palsey--one of the main causes?? PRESSURE in the brain! So hoping this will bring us to relieving pressure in the spinal fluid, which could put him pretty much back to normal. OK AZ backward small-town doctors...WHAT NOW?? Don't listen to the woman who's been with him for 27 years!! They also haven't scanned anything but his head. Dementia-like symptoms can come from elsewhere...no one has checked anywhere else. In fact, when he was being hospitalized to be medicated, they only consulted with internal medicine physicians and psychiatrists when I told them repeatedly he had an abnormal EEG from one of the AZ neurologists.

A Few Steps Down the Road to Diagnosis

Gary has gone downhill fast and has been loosely diagnosed with dementia. The ONLY way he's semi-normal is on medication and it took 10 days in 2 hospitals to get him stabilized the first week of May. They don't have care for him in Bullhead City, AZ. At the beginning of May, after a call from the cops when he wandered to a neighbor asking them about shadow people, the amateur doctors sent us home with an antipsychotic medication that caused him to go crazier and I woke up with him standing on the mattress over my head about to step on my head/neck because he thought someone else was in bed with us. Without the meds, he is hallucinatory and completely disoriente--and with the wrong meds/wrong dosage, even more dangerous. Not knowing how to lay down in bed at night is just one piece of it. I live in a surreal world right now. First time I caught him hallucinating completely floored me. He is changing rapidly and I need the better care for him in Vegas STAT.

SO--our youngest daughter, Sami has come back to live with us for her senior year in high school to spend time with her Daddy and to help try to keep Gary here "with us" as long as possible. AND...we move back to Vegas. Our house is under lease with good tenants until Sept 2013...so we are temporarily moving into an apartment. PLUS, I need to not have to care for anything other than my family and ensure I'm keeping my job. My company is providing office space for me at their Las Vegas branch to accommodate my need to have proper care for Gary. I feel so fortunate!! Been with the company for 3 years next month and I love my job. I am so thankful for such a HUGE favor from them.

We are just flexing our living situation with the healthcare needs, which, unfortunately, it seems, are going to decline rapidly from here.

What is wrong with Gary???

Gary can't even lay down and be still right now...it's crazy...he's tossing literally every 20 to 30 seconds in a half-out state...then gets up and is disoriented as hell to where he doesn't know where he is or what he's doing. Can't even remember which direction to lay down on the bed. Sideways, diagonal, crawls in and out over me. It's SO WEIRD!!