He’s coherent! I talked to him on the phone twice, once yesterday afternoon and again in the evening. They still won’t let him eat or drink because of his swallowing problem so he asks that you all have a drink and eat something for him.

He’s weak and tires easily, but would love visitors for short periods, to keep his spirits up. G and I will be going in to see him tomorrow, I think Rick will be in to see him too.

The doctors say they think he’s been having pseudo seizures. Nothing shows on his MRIs or EEGs. His blood work and all is good.

In other words: they still can’t figure out what is happening.

An ENT doctor will be checking on him about his swallowing problem and who knows who all else will be dropping in so his insurance company can pay them.

The Curmudgeon and Gavin

I was wrong.

Went to the hospital with The Curmudgeon’s oldest and dearest friend Rick today. I felt that Gina needed a break.

The Curmudgeon’s brain seems fried and beyond reach. Yeah, he didn’t know me.

The doctors don’t know what’s wrong. They’ve put him back on EEG telemetry.

I know I should be there with him each day, but it’s hard to go and see him like this. He’s not there. That’s some stranger in that bed. I don’t think he’s coming home.

G and I went to the hospital to see The Curmudgeon. We found a shadow of him in the bed. Incoherent talking nonsense completely scaring me out of my mind strange.

This wasn’t the same man we saw the last time we went in. This was someone who had gone beyond the weird.

I am crying my eyes out. I am afraid. I need to be surrounded by people who care, but that’s not gonna happen.

G is my only anchor. She’s kept me from going off the deep end and I hate weighing her down with it.

Sometimes that deep end looks far too inviting.

As soon as we walked into his room (the third one since he’s been there) I knew something was terribly wrong.

A nurse was feeding him and he was gibbering away about spies, strange machines, and other sorts of nonsense. His hands shook as he plucked at his hospital gown and he looked years older, thinner, and not like himself at all.

My heart shattered. I couldn’t stay in the room with him for more than a few minutes at a time, I’d have to go out into the hall and cry.

Dad is gone, Mom is gone, and three sisters are also gone. The Curmudgeon is an only child and his parents are also gone.

Again, my heart shatters.

I didn’t know I could cry so much.

I didn’t know I could feel so alone.

I didn’t know that I could feel so lost in a room with people.

I don’t think he’s coming home.

Now, according to the last doctor who called me, we are dealing with Sundown syndrome.

Sundown syndrome is a term that describes the onset of confusion and agitation that generally affects people with dementia or cognitive impairment and usually strikes around sunset.

Where the hell is my lottery win so I can make sure he gets the care he needs that I am not capable of giving him?

He looked so much better when we saw him and then I find out that later that evening, he exhibited these symptoms.

I need a padded cell.

Lucy and Gavin miss their Daddy.

So Good Shepherd rehab phoned me and a nice lady was telling me all about how they are going to work with The Curmudgeon if things go through. Sounded good and she promised to call me back and let me know…I never did hear back from her.

Fifteen minutes later some other place called (the woman slurred the name so badly I couldn’t understand it and she wouldn’t repeat it) I stopped her two minutes into her spiel.

“Um, Good Shepherd just called me. Have you actually talked to my husband’s case worker or anyone?”

“Well not actually.”

“Not actually? Really?

Tell you what, you call his case worker at St. Luke’s and between you, the case worker, his doctors, Good Shepherd, and all the rest of you money-grubbing vultures maybe y’all can actually talk to my husband and make some sort of arrangement. Then one of you call me when y’all have all your little yellow duckies in a row. How about y’all do that?”

Yeah, that southern influence sort of comes out of me when someone pisses me off by assuming I know what the fuck is going on with this shit.

OMG what a cluster fuck this is. I didn’t dare drive out there for fear they’d transfer him somewhere while I was en-route. It would be just like them to do that.

So tired, so stressed out, so lost. I am not feeling very social. G knows me well enough to not allow me to fold into myself.

The drive over to the hospital where they have The Curmudgeon now sucks big time. I’m so stressed that I have to impose on G to go along and be my navigator because I can’t remember from one minute to the next, how the fuck to get there.

He is very pissed at me for letting them take him there. But they don’t have the EEG monitoring available at the Allentown hospital. So far I am not unhappy with the nurses I’ve met on the 7th floor. Give it time, if they screw around with me or him, I will go ballistic. At least he’s not back on the 8th floor where he was not treated well.

I have many appointments over the next couple of weeks for me in various places at various times. I am NOT going to be able to drive over there every day.

Thank goodness for his speech therapist, I called her to tell him he is in the hospital because she has an appointment with him here Tuesday. She’s calling all the other home care people to let them know so I don’t have to. I really like this gal.

I hate that the phone won’t stop ringing–all the fucking political calls. Every time it rings I go through the roof.

Couldn’t understand why The Curmudgeon wasn’t downstairs when I noticed that the clock said twelve noon. I went to check on him and he did not wake completely or easily. He spoke gibberish and was acting strange.

The only coherent thing he said was “NO” when I told him I called for an ambulance. Tough shit dear, you are scaring the crap out of me, of course I’m calling them. You need professional care and I am not a professional.

He’s been transferred to St. Luke’s in Bethlehem so they can monitor him with EEG set up.

I am exhausted. Scared to death too because they asked me about intubating him and I had to follow his wishes and say no intubation and that he is a DNR.

We met The Curmudgeon’s visiting nurse today. She’s nice enough, but so damned young.

Once again, all the years of research I’ve done on MS and secondary progressive MS proved to be ever so much more than what most doctors and nurses know about what is going on. Spent quite a while getting her up to speed on his drugs and the whys and what-firs on his use of them. I’m sure this won’t be the last time I have to do this for her.

Two more visiting entities means more teaching on my part. Hopefully by the end the next patient benefits from what they learn here with The Curmudgeon.

He doesn’t shut up! I haven’t had a second of peace since they put him back on the stuff.

And I can’t stuff a rag in his mouth, that is not acceptable behavior. Can’t use duct tape, again not acceptable behavior.

I put my earplugs in and he talks louder.

Beg him to shut up and he gets whiny.

I can’t send him back to the hospital, he isn’t sick.

Me while aiming Minion fart blaster at The Curmudgeon: “Ve Haff ways uff making you drink the thickened stuff.”

Him: “Yuck, noooooo!”

Fart blaster farts a juicy, extended fart.

Him: Laughs.

Me: “Just try it. Please?” This is going to hell on wheels. Rolls eyes.