A New Step

We have had a bit of a rough week. Wednesday Glen was very low energy all day. His color seemed off to me, but sometimes I don't really trust myself. But he just seemed genuinely ill. Then after he went to bed, he threw up all over the bed, himself, etc. I will pause here to say I have NEVER been good with the yuck factor. Don't think I ever will be. OK, moving on.... While I was getting him settled, he asked if he HAD to go to Club in the morning (how the clients refer to the day care center). I said of course not if he wasn't feeling well and he said good.
Got him and the bed changed and cleaned up then sent a message to the doctor that I'd be calling in the morning. Kevin stopped by after work, and for a whle just lay on the bed with his Dad. They talked about playoff beards and the Stanley Cup and Kev promised Glen the Sharks would go all the way next year. (Came out later and said.. um.. I think I need to write to Doug Wilson!) It was the best, most lucid conversation they'd had in probably months. Of course.. when Glen threw up, he lost all the meds I'd just given him. That awful truth about some psych meds.. they calm the illusions and hallucinations, but the person can get lost in the process.
At some time during the night, Glen got himself turned sideways in his bed.. now.. that completely defeats the purpose of having a bed that can raise his head .. he kinda looked like the filling in a taco! But he slept well the rest of the night so that was good. And Kevin and Rushi came back and spent the night here, which helped me get some sleep.
Dr North called first thing the next morning (I mean like before 8 am!) He said his best guess was that Glen had had an "aspiration event" that set off a chain reaction. Then we got talking about the proverbial elephant in the living room... hospice care. Hospice will provide us with a nurse visit once a week to check vitals, oxygen level, etc. They will keep track of meds and help me tweak dosages etc.. whereas he sees his doctors once every 2 months. They can provide someone to help Glen shower, help provide equipment, etc. (For example... we own a table like those you see next to hospital beds that we use in the family room with Glen's recliner chair. I realized that as Glen spends more time being more comfortable in his bed.. we're going to need the same kind of table in there. They don't come cheap and if hospice can loan us one.. awesome.) Anyway, Dr North and I agreed that it really is time to bring them in. Our focus is one of keeping Glen comfortable and allowing him to have as much quality of life as possible for as long as he has left. And the good doc assured me that they will continue to check in with us. There will be no feeding tubes, no trache tubes or respirators. Glen was adament about this when he was first diagnosed and we will honor those wishes. So... the hospice nurse is supposed to come by today. I know they told me a time... I should have written it down. Sleep deprivation is messing with my memory.
He had a pretty good day yesterday, went back to Club where they said he did fine. Then last night he was agitated again. Got up several times during the night. Today he's very low energy, color off, etc. He doesn't tolerate heat well these days (those of you who used to run with him know what a HUGE change that is!!) so we will be pushing fluids with this hot/humid weather. Popsicles seem to help a lot.. can't get him to eat jello. He's low energy again, lots of coughing, groaning, etc. And very agitated. He keeps peeking out the drapes to see who's in the yard. For the record.. outside of possibly the cat, nobody's in the yard. I have the ok to increase his seroquel again. Might have to today.. we'll see.
On a good note, there is concrete in the giant hole in our backyard (try keeping two nosy dogs off THAT!) Looks like the refi on the house will go through so we can finish the project, then pay off the loan when other financing comes through. And so the roller coaster that is our lives continues.