Either Saturday night or Sunday morning

About 15 minutes ago I was awakened by my cell phone and wondered What in the.....?  It was the guy across the street wondering if David got into the house and telling me that David's car was running with the door open.  So I got up and sure enough.  David was in long underwear in hiking shoes, his down coat with the feeding tube holder around his neck trying to open hearing aid batteries in the bedroom.  I sleep across the house in the guest room these days.  He said he know what he was doing and said No NO NO NO when I told him I was going to turn off the car.  Well, I did.  Then I came back in and told him to go back to bed and helped him off with his coat. He had on 2 pair of long underwear but no "outer" wear.  The room was full of clothes.  Wet tee shirts from the leaking feeding tube, wet underwear, socks, pants, a couple of shirts, pajamas dampened by the wet stuff and several pair of shoes.  I noticed that he was not wearing the disposable underwear and he told he'd tried it but it didn't work and was really upset with me.  I got a pair for him and he let me help him into them.  I put some long underwear over it, covered him and said good night.  He took his hearing aids out, placed them into the case, turned out the light and I hope that he is sleeping.  I have the car keys and he will NOT be meeting Fred to walk.  He gets worried about not getting to the park on time and last week tried to go at 5 a.m.  I stopped that when he couldn't find his keys.  After getting him to bed I checked the kitchen where I laid out the morning food and meds. As far as I can tell, he gave himself breakfast Jevity (his food) and possibly a decongestant and antibiotic as the dosing cup for the Mucinex and the syringe for the antibiotic seem to have been washed.  He didn't take morning medications.  Those containers still had the powdered meds in them.

I am totally furious with the hematologist who did not warn us of the dangers of memory incapacity with steroids.  Earlier today I thought he was more "with it" but now I know better.  Not only is he very confused and disoriented; it is hard for him to stay asleep, another wonderful side effect.  This is awful and if he doesn't snap out of it, he cannot stay at home.  I am not equipped to run a single patient nursing facility and the house is not secure.

I spent the day researching ITP and any reasonably local experts.  I found only one within 75 miles.  She is at UVA Medical Center and has published in the peer-reviewed journal Blood.  I think I have a game plan.  He has an unresponsive case.  Protocols vary based on test results that pinpoint the part of the pathway that is being affected.  Since hematologists are also oncologists, most of their practice is oncology and that is where their interest lies.  ITP does not affect many non-cancer patients or many of the elderly and the type that does not respond to first or second line treatments is rare.

I am exhausted, depressed and very sad that he is going through this.  He must be scared.  After having a tantrum with me, he calms down and does what I ask of him.  I was too tired to walk with him today but tomorrow we have to walk.  That seems to make him less confused as well as tired. The silver lining is that he is no longer trying to print stuff from his computer that won't talk to the printer.  That drove me batshit.  Windows 10 and the HP printer do not communicate well.  The workaround is to email the stuff to the printer rather than print it.  This only works if it is possible to email something.  He can print from his iPad but keeps forgetting that.  I can try going back to sleep since I have the keys hidden from him.