Sleep deprivation caused by care-giving is strange. On the one hand you stumble through your day with gritty eyes, heightened sensitivity to noise and light, and emotions alternating between frayed and raging to numb and muffled. On the other hand when night comes you are torn between wanting to crash early to get what little sleep you can before the nightly round of interruptions begin and taut wakefulness waiting for that first shoe to drop...
Last week I was stressed - one of his most important meds was not scheduled to be delivered in a timely fashion, another needed a refill that required talking to the prescribing doctor, who I couldn't get in touch with. Being without one starts the spiral into mindlessness, lack of the other could allow the seizures to return. I made what phone calls I could to set things in motion, even made a 4 hour round trip to pick up a partial refill of one to tide us over until the 'real' refill arrived.
Unfortunately a couple days on short rations of the anti-ammonia med allowed him to slip into another round of encephalopathy, which is both scary - each new round does more brain damage, from which there is no recovery - and frustrating for both of us, as it makes it hard for him to communicate or understand. This caused stress, and the stress caused the ammonia to rise still more. Minor falls increased, and his temper with it.
He always gets up hourly to potty but I was so exhausted that when he started getting up every 15 minutes I was too out of it to realize it was a new symptom. By night three he was getting up every five minutes, heading for the bathroom, seeming to forget why he was there (coming or going?) coming back, often needing help to get back onto the bed (still more sleep loss for me) then getting up again almost immediately.
Finally Thursday night he stumbled and took a bad fall. Half asleep, I actually heard and recognized the stutter-step that meant he was about to go down, but there was no way to get to him in time. Down he went, hitting his head on the corner of his nightstand. I flew out of bed - this could be serious! Scalp wounds are a bloody mess at the best of times - ever watch a wrestling cage match? - but with all the damage his poor head had already taken I was in a panic, though I had to hide it so he wouldn't get agitated. I cleaned him up as best I could to get a look at the gash, but it was really hard to see - at 60 he still has most of his hair, and it was blocking clear view of the damage. I got on the phone with the ER for advice, and sure enough he strongly urged me to bring him in ASAP.
So after less than one solid hour of sleep, at 3 AM, I downed a 5 hour energy, got him at least partially dressed, plopped him in the wheelchair and got him into the car. I kept him talking - I vaguely remembered something about keeping concussion victims awake - and it didn't occur to him to ask where we were going until we were almost 1/2 an hour down the road. When I told him we were going to the hospital so they could check out the cut on his head he suddenly realized it hurt. Poor baby hadn't even remembered he had hit his noggin until I reminded him. He complained briefly about the headache, then got sidetracked by a random thought and forgot about it until we got to the hospital.
So we arrived - thanks to my pre-calling they had all his records and new wrist band waiting. The cut required a partial tonsure so they could evaluate the damage, 4 staples (painful even after they sprayed it with numbing stuff ) and a CAT scan to confirm that he had not, in fact, suffered serious new damage. I took advantage of the presence of the doctor to inquire about the concussion victim being kept awake theory, and apparently what I had heard was partly right. If a possible concussion falls asleep it is OK, but they have to be wakened every two hours. If they cannot be awakened, then they have to get special treatment. Note to self...
They had tried to get him to use a urinal - no luck, though he painfully needed to pee. They tried a bus-mans friend, but nothing came out. Finally they catheterized him, and he got relief - and we got our first clue as to the third issue - he had a UTI, and his prostate was slightly enlarged - which explained the potty shuttle and another cause of his loopiness. I felt guilty - if I hadn't been so exhausted maybe I would have recognized this increase in bathroom visits, with scant results, as a new symptom. But they soothed me - I was doing a great job, and as tired as I was this was easy enough to miss. Between his muzzy-headedness and the stink and mess of his constant diarrhea, noticing cloudy pee and changed odor would have been impossible, and the extra visits could have been him forgetting why he was there.
So they put him on antibiotics and found him a bed, and by about 11:30AM they had enough info wrung out of me I was released to go home. Between the bright sunshine and the relief that he was in good hands I made it home in one piece. I fell into bed about 2PM, was rousted twice by phone calls, but mostly slept till 6. Got up, ate, puttered in the kitchen a little - dishes mostly - then back to bed for a good night sleep.
Called and spoke to him Friday evening. He was convinced he was coming home today, and had his young nurse believing him, so I went to bed sure I was getting my last sleep for the foreseeable future. Happily, today his day nurse set me straight; he is in no state to go anywhere yet, and will probably not be cut loose until Monday - maybe Tuesday. She completely understood the way I was torn between relief and guilt at that relief - she wanted to know how it was I managed as it is! Honestly, I said, I don't know - I just get from one day to the next as best I can.
So now it is raining, and I should be doing some of the cleaning and organizing I keep promising to do on a day like this - can't weed in the rain. But my head is still too muzzy to do much more than set this down so I have a record of the sequence of events - the primary reason for this exercise.
Before I left the hospital, clearly knowing the whole history of what had been going on, and how hard this all was on me, and that there had been a search on for a 'home' for him, the doctor asked if I was planning to take him home again once he was back to 'normal'. He seemed surprised, impressed, puzzled and concerned when I said yes.