Another Scare

"Susan, Bob's condition has dropped, Wayan said apprehensively, “he was watching TV and just fell over with his eyes open. I thought he was dead. I’m taking him to the clinic.”

I knew Bob had had several days of hands trembling so erratically he couldn’t feed himself. He often couldn’t get up out of a chair on his own and needed assistance to walk.

I was just winding down from dinner with friends when Wayan’s call came in. I dashed off to Toyo Clinic. Bob was already on the bed when I got there. His vital signs all looked normal but he was in a deep snoring sleep that he couldn’t be roused from. 

The doctor pinched him with no response but when he tapped his eye lids, Bob winced.  We called his name but his face registered nothing. When they put the IV in he curled up in pain raising his legs. And then he settled back down into snoring once again. At one point I took his hand and he squeezed me back.  It felt like he was trapped in deep sleep with his eyes tightly shut and yet there was a part of him that was aware.

We decided on the IV in case it was dehydration again or we needed to give him pain medication.  But we did refuse a CT scan to see if it was a stroke. “What is the point?” we thought. Bob’s advanced medical directive made it clear he didn’t want his life prolonged in his current state.

I find it difficult to get the down and dirty of the last stages of Alzheimer's on the Internet and there are no resources here in Bali to fall back on.  I Googled and read and found there are missing answers in the very complicated world of dementia.  I was hoping for a detailed description of end stage Alz so I could ascertain if that’s where we were.  I needed something other than this void of not knowing - some reassurance that we were doing the right thing. One of my biggest fears is that I’ll accidentally hurt Bob in my efforts to help him.

I found this site a helpful reminder to honor just what Bob wanted -

http://www.alz.org/national/documents/brochure_endoflifedecisions.pdf

This morning when I went to check on him, he was awake and talking. He talked to his daughter on my cell phone and generally seemed to be his old self. The trembling had lessened considerably.  But as the day progressed it became stronger and we found if we gave Bob juice or food it lessened again.  We're pretty sure this problem is from low electrolytes caused by dehydration.

Bob’s appetite was the usual ravenous and he was talking in his normal incoherent way.  Now it’s almost evening and it looks like he can go home. 

I’m exhausted! I can barely keep my eyes open. All this almost dying and coming back has me trying to accept the end one minute and then breathing a sigh of relief when he gets better the next.  And that relief is tinged with guilt because I feel I shouldn’t want him to recover since he didn’t want to be like this in the first place.

Alz World is confusing for all of us!

If anyone reading this knows what end stage looks like in detail, please write and tell me. Or if you know about this trembling I’d like to understand it as well.  In the meantime I’ll e-mail our Bangkok doc and see what he can tell me.