Things have not been so good this week
Monday I called to set up appt. with onc. only to discover he had one scheduled for 10:30. Who knew? Rehab gave me grief for short notice but said they'd get him ready. Got there only to find it had been cancelled. Finished up my visit there with the social worker who informed me that insurance would eventually stop covering care their for "failure to make progress....."
Talked to reception at onc who said the doctor would call Bill later. I asked them to call me. I got a voice message to call and schedule an appointment for chemo when he was out of rehab. If I had any questions I could call back. YEAH...I got questions....Like who's steering the dang ship! Finally talked to the doc in person he was surprised to find I thought Bill had deteriorated (he had thought he was doing better...don't know how he thought that). But said he would continue to be the focal point and would get the PET scan and follow up appointment in place. Visit was rough, Bill had 2 bad episodes, one of which really seemed to bother Thomas so I had him take the dogs for a walk around the building. Later the 12 lb dog scared the bajeebers out of the nurse when she came in and he barked at her.
Tuesday: Between work calls, scheduling the PET scan and finding out my car was ready to be picked up (with over $1K in repairs) I got 3 hang up calls from rehab. I called to see what was up. None of the staff had called, he seemed to be sleeping at the moment but had been seen with the phone earlier. Oh and by the way I might want to consider aligning their paper work with his advance directives. Took care of that detail when I arrived after dinner. Bill was anxious to see us when we got there....said he wasn't sure we were coming
Also made me come close so he could tell me not to say any phone numbers or SSN's where anyone could hear and that he wasn't paranoid.....
He was in and out of coherancy, but ate half the ice cream I had brought him and was able to laugh at his "really active imagination" when he realized his scouts really weren't sitting on his shoulder... Much harder to watch him drop his beloved laptop on the floor and then spend an hour trying to log in......He so wants to be in touch with you all and talked about meeting up with Kathryn and trying to get to Saratoga.
Wednesday: The nurse from rehab called to see if he was still having the PET scan next Monday and to make sure I understood what the advance directives meant. Yeah, I know what they mean. Withing 2 weeks of helping my dad complete his he was gone....I know what it means, I know what it looks like and it's breaking my heart but it would break my heart even more to watch such a vital, stong, intelligent man linger with a shell of a life. She also see's where he has declined since he arrived. His blood work was showing beginnings of dehydration, they had given him some additional meds for since he seemed particularly twitchy/aggitated and was not responsive/coherent to questions.
Before I got there after dinner I got another call....He had fallen out of bed. No apparent injuries and they didn't think he had hit his head but would be monitoring his vitals frequently. Apparently he had been extremely fidgity/twitchy at shift change and had lowered the bed to it's lowest level (well below the knees). When they found him he it appeared as if he had sat up and slid off the bed leaning against it. When I arrived the nurse said she'd been visiting him and he had told her how he went to military school and grew up locally....none of which was remotely true. He spent most of our visit in an alternate reality getting angry/aggitated when we couldn't see/hear what he did and just as angry if we tried to play along or comment on his "active imagination". He nearly swated me across the face at one point in his aggrivation...to be fair though his depth perception is out of wack. On a good note he did drink about half the chocolate milk shake I had brought for him. I started the paperwork process today for 10 paid days of FMLA.
Life is a roller coaster.