Today was a bizarre turn of events.
Up early and depressed to hear the auto coffee grinder spinning without beans in it towards the end of the cycle....sitting here realizing I forgot to stop at Petes on the way home... /sigh
Jordan has a city car share where he can reserve one around the corner, so we took that down to the hospital with buck. I got an email early from Bill saying he was going over with pizza so I didn't bother with the sushi as I knew he wouldn't eat it. I wrote a quick email to his case manager about everything then we set off.
We got there and had no issues getting buck in. there was a nice man in the lobby who was a lab lover and wanted to love on buck so I visited with him for a bit and let him get some love. Buck was a little anxious, but that harness works a treat I just hold his strap in the back and he stays still.
Got up there and Bill was there visiting. Unsure if he ate the pizza - it was a white sauce with chicken. he definitely ate one of Jordans cookies. Buck sat on the side of the bed with his head in Richards lap as a ploy to try to get pizza from across the bed, but whatever it worked out good because that is super comforting. Richard was in sensory overload and wanted a room clear pretty quickly. we left. Took bill with us and went to Whole foods in search of raw milk. Company policy they dont carry it.... /sadface. Dropped Bill off in Castro - he lives on the most wonderful street - and he pointed out our target meeting spot for tomorrow. We are going to go to Fort Funstun with Buck to walk the cliffs.
Came home, ate and did a little bit of work and headed back over there around 3pm. When I got there he was sitting on the edge of his bed in an almost panic saying he wanted to get the hell out of his room. So I got his chair and he got himself in it and started wheeling himself out of there as fast as he could. He wanted to go to the roof. Wrapped him in a couple sheets gave him my 'I just got my eyes dilated' wrap around shades and headed up there. Immediately when we got up there he wanted to go to the therapy room to find out if he had an appointment. They said he did and paged the person. We went to the roof and sunshine while they figured it out. We sat just on the edge of the sun and talked. He wanted water but the machine was out so I got an Orange Crush. He drank most of it. His mind was on and off. Kept referring to Buck as Bic. I would correct him and he'd say why do I keep saying Bic? He asked if we all still had a bunch of artwork sitting in our garages...he thinks the rooms ought to have more art to stare at. He enjoys his mind slip ability to be able to visually hallucinate when staring at something, and was wishing for some sort of artwork on his wall that he could do that with - he said even if it was a framed picture of bricks it would be good. It was like mind gone body in hyperdrive action. He was very very physically motivated. Wheeling himself most of the time and doing a pretty good job of it. His timing demand was like chop chop today which is a complete 180 of his normal lethargic self. We stayed for probably 20 minutes then he wanted to go back to the therapy room and we waited for the physical therapist.
this is all potentially a result of the time released medicine being back to normal? I don't know and I'm going to have to see if he is the same tomorrow. If he is, everyone hold on to your seats, we are about to freight train through therapy with both feet in.
She checked blood pressure - normal - and then had him get up on his walker - walk to the end of the room and back. He did really well. Little worker bee today.
His pressure had dropped enough for him to be dizzy and nauseous so I had to bring the chair closer and he sat back down and had to wheel himself back towards me into a parking space. his left hand starting failing at this point, with confusion between right and left pressure required to get moving straight. Let the BP settle a bit, and then did a stand in place - dizzy again back down. Resorted to just leg lifts - that also made him dizzy. He asked what he could do to get rid of that. She said it was a direct result of fluid intake (!!!) and nutrition which was my que to employ her to advocate for his fluids with me. He got it too. I explained the whole thing to her and she said she would help. He had enough and was ready to go back to bed but he still needed to do occupational therapy. His mind was very tired from all the overdrive and concentrating. I asked her to send the therapist to his room and we returned there. I asked him to try not to flop in bed and Ill be damned he didn't. they had to pull him higher in his bed but he did really well today. Asking how he is feeling he replied like the entire rear of his head was missing. He was exhausted. He told me to go on home, but I told him I was going to make sure he cooperated with the incoming occupational therapist first and he laughed at me. then I acquiesced at his promise to do so. I asked them not to do anything that required a huge amount of concentration since he was whipped already. Kissed him goodbye and trudged off for the bus.
The therapist met me in the hall and said she talked to the nurse about the fluids and that the doctor wanted a urine sample to be sure there was no infection blah blah blah - GIVE HIM THE IV ALREADY Im thinking... I went to find the nurse and clarify they wanted a sample and who knew and who would be getting it and to let her know he had some soda in his belly so could potentially pee soon. Went back to Richard. Reminded him to drink at least one nasty thick water before he slept and to save his pee for the nurse...and left for real this time.
Cried a tiny bit walking down the hill. There's such a motivation in him but such an uncooperative body and a mind that seems to have a hole in it sometimes...and I imagine how frustrating it must be to be trapped like that in a failing body. I'm so glad he's not alone. So one tear was for how beautiful it was to be me at that moment and the other was for him.
To my shock, while standing at my bus transfer halfway home I get a call from him on his cell saying "All done! I did it all!" He said he couldn't do the buttons (they wanted him to practice on an oxford shirt) so instead he took a long rope of clay and broke off pieces and made them into little balls. he said it took forever long and hard and required a lot of concentration.
Both therapists promised me they would coordinate with each other better to give him a nap in between for tomorrow and I reminded him of that.
I took the second bus past the house and down to Haight. Got some shrimp and then raided the whole foods across the street for some veggies, and quinoa chips. Found some cool looking aloe vera honey dew water for Richard to try tomorrow as well. Came home with the intention of making a cabbage shrimp curry, but after walking in the door and right back out again with Buck for an hour in the park....I had a dinner of chips and salsa and a gallon of water. Im just so tired and the thought of peeling and deveining shrimp, cooking and then having to clean a kitchen isn't appealing one bit. Plus I know Im going to have to sit down and email everyone and these take forever.
Then my super duper added bonus is my phone rings during my pauper dinner and its his nurse. She says she spoke with the doctor, got him on a med to increase his appetite, and approved an IV drip for overnight to get his fluids back on track. HIP HIP FUCKING HORRAY!! In addition he is reporting no more double vision but continued blurry vision. Im going to have him look at some pictures tomorrow to verify.
Hugely unexpected strides today. Really believing in my heart that he has a tendency like dad (no offense, dad) to not hydrate well, and that this dehydration has been chronic, but rehydration will help thin his blood out to improve his blood pressure and dizzy spells. I would expect to see a significant result by the end of the week with continued hydration allowing him to plateau back out to normalcy if it works. Fingers crossed on that one.
Until tomorrow!
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