I had meant to get an update out yesterday, but since I am now awake at 2:45AM I might as well do it now.
The doctor followed through on my suggestion and did an ultrasound - his stent was fine, in position, and working. They also determined that his gut fluid levels were not what they had feared and passed on doing the needle test. Instead they raised the dosage of his meds and kept him under watch.
Once his ammonia levels were back to a reasonable level and he no longer required constant medical care, just the constant supervision, they located a relatively local nursing home about half way between me and the VA, with both a dementia ward and rehab facilities. When I had spoken to the social worker I had made it clear that if he was given rehab and he improved enough that he could be safely left unattended for periods of time I wanted to bring him home. This sounded like an ideal 'half-way house'.
Except that the day after they transferred him there, as I was en route to sign the admittance papers, he took a fall, cut his head again, and was transported to the local ER - 4 more staples in his head. He seemed reasonably alert and cheerful, though still a bit confused, so once they were ready to release him I personally drove him back to the nursing home. He was not at all happy when we got there - he clearly thought that my being there had meant he was going home. I felt lousy leaving, but he seemed to understand what I was saying; if he works well at the rehab so he can move around better I would bring him home.
However, when I went back up to get the papers finally signed the next day it seems there had been a miscommunication. The VA was putting him there long term, and unwilling to pay for rehab. As nearly as I can figure it they know that with every new encephalopathic episode he would 'lose' everything he had relearned, so it made more sense to simply put him in the dementia ward. I was unhappy, and questioned the wisdom of doing it this way, so they were going to set up a three-way conference between the staff, the social worker and me for some time this week, to discuss the situation.
He called tonight, around 8PM, sounding agitated, angry and confused - he wanted me to come get him. He hates it there - the other patients - all full-fledged dementia and Alzheimer's patients drive him crazy. The staff doesn't do anything he wants them to do. They tell him what to do. I tried to soothe him.
I also reminded him that even at home he hadn't done the walking exercises the physical therapist (at the VA months ago) gave him. He also had refused to do the mental stimulus exercises - puzzles, reading etc that he was supposed to do to boost his mentation. So if he still was having trouble walking and reasoning he clearly needed 24/7 watching, which I couldn't do at home. He got angry - to the tune of 'thanks for nothing'. I know I was right, but it didn't make me feel any better. He also complained that he didn't like the food - they kept bringing him hamburgers, and he is supposed to be on a very low protein diet. That upset me and I promised I would be on the phone first thing in the morning to find out why he was not being kept on the proper diet. That seemed to help calm him a little.
So - at 2:45AM the phone rang. I was annoyed and muzzy-headed - I had finally gotten deep into the most healing sort of sleep - but it was neither a wrong number nor some touron looking to book a room. It was the VA social worker. He had just been taken back to the local hospital after another fall. More telling was that his mental status had taken a nose dive. He had gotten up to go to the bathroom, which happens several times a night, but he neglected to remove his pants first; needless to say he managed to make quite a mess . The staff tried to help him and he became aggressive, combative. Then he fell.
I explained to the social worker, who clearly thought this was some radical new symptom, that no - this has happened before, while he was still under my care at home (fun to be me, huh?). It meant he was having yet another incident and his ammonia levels were probably through the roof either because he was not on his proper dosage or due to his diet. I wanted him moved to the VA, where they know his history. She recommended calling the ER and filling them in on both his condition, and my request for the transfer. So I got the number from her and called. The nurse said she would inform the doctors of both the reason for his condition - encephalopathy (I didn't get into the diet as the most likely cause, as it wasn't relevant to the situation) and my request for a transfer. No promises - but at least I had given them a starting point for treatment. I'll call again in the morning
So here I am - once again awake in the middle of the night due to his condition, even though he is supposed to be getting proper care by competent staff. At least I know it wasn't anything I was doing wrong now, but I am very unhappy with the nursing home and the VA at the moment. I don't know how many miscommunications I haven't yet discovered. First being put there for long term care in the dementia ward rather than getting help in rehab (though as I said, I think I understand why), then not keeping him on a low protein diet. I need to talk to the staff and find out if they were even informed of that - and if so why wasn't he being given the correct food? If not I want to know who briefed them on his needs.
Even at the VA there were miscues about that. When I first saw him after his gall stone incident he had been given chicken with cheese over it for dinner - not exactly low protein in my book! When I questioned the nurse at that time she said 'oh no, he's on a low fat diet for his gall bladder'. So apparently the gall bladder doctor rules over-rode the liver doctor rules when he really should be on low sodium (blood pressure) and low protein (liver) and low fat (gall bladder). Not an easy diet, or particularly palatable without careful thought, but doable. I was doing it as well as I could at home, but here they don't even seem to be aware of the need.
Yet even at home, even with me keeping on top of his meds and keeping him on the prescribed diet, he still fell back into this state, so maybe he has gotten past the point where anything is going to help for any length of time. One of the doctors did say that as the disease progresses his liver is going to do worse and worse, and no matter what we do his ammonia levels are going to rise. The rest of his organs are already compromised - his kidneys are already struggling with the strain; not yet to a point of needing dialysis, but they are watching them.
So how am I supposed to go back to sleep after all this? It's almost as stressful as if he was still here. The only difference is that I didn't have to be the one cleaning up the mess or driving him to the hospital, and I am home rather than sitting up in the glare and noise of another ER. It never stops. However, when I think about what it will take for it to stop, I bite that thought back, because with his condition only two options will make it stop - a liver transplant or death. The odds of him getting a transplant now are remote due to the advanced damage to his brain - what kind of quality of life would he have? Why make him healthy enough to spend 10 years in a dementia ward instead of just one or two?
I reiterate what I said earlier. This sucks.
Tuesday, August 9, 2011
This stinks. I would say it sucks, but that doesn't cover it either and I never liked the phrase, pithy though it is. I wrote the following and meant to send it out a couple days ago, but mental inertia left me unable to follow through.
The last time I picked hubby up at the hospital I had told the social worker I wouldn't 'warehouse' him until I looked in his eyes and didn't see him there.... Well, yesterday I called in time to catch the doctor. I asked how he was doing and if I could pick him up. Instead of the usual yes, he's ready, come and get him I heard Come on up and evaluate him to see if you want to bring him home. Uh oh.
I figured OK - new ward, different doctors, not familiar with him. Maybe they just weren't sure what his baseline behavior was and were worried. So I packed sweat pants (easy on, comfortable for a long rife), socks, sneakers and a t-shirt. Loaded them into a small backpack that could hang from the handles of the wheelchair for ease of transport, and off I went.
When I checked in at the nurse's station I realized I had been wrong about one assumption - it was, in fact, the same ward he'd been in the last two times he'd been kept. Then the nurse, one I had spoken with on previous visits, told me again that I needed to assess whether I could handle him. Still optimistic I said OK and trotted on down to the room she told me. There was, as last time, a 'watcher' on duty - usually this has been to avoid falls. This time it was more urgent. He had apparently ripped out his IV, so they were now giving him his antibiotics in pill form. He was lying partially sideways on the bed, legs hanging off the edge. When he saw me he barely reacted except to say "OK, let's go!". For a long, hopeful moment I thought it was his usual anxious desire to get out of the hospital, but it quickly became obvious he was not right.
He couldn't focus on my face when I tried to talk to him - his eyes were constantly flicking here and there. I asked if he knew who I was. I had to ask three times before he finally said my name, and even then he couldn't hold my gaze. He wanted to know when we were going to leave. I said he had to get dressed first - he didn't want to leave in pajamas, did he? He said "I don't give a shit!".
I said "But I do!" and gave him the socks I had brought. I was already having serious doubts at this point, but I told him if he could get dressed we would go. Five minutes later he finally finished putting on the first sock, in between bouts of laying on his back repeating his mantra 'OK, let's go!". Apparently he had been saying that all morning, not just since I arrived. I asked to speak to the doctor. I was left alone with him for about ten minutes while the watcher went off to find the doctor and nurse. During that time he asked me to come closer. When I did he grabbed my arm hard enough to leave a bruise. I jerked out of his grasp, but resolved to keep my distance after that. I tried to help him with the other sock, and accidentally hit his foot in my crotch. That set him off on a round of 'inappropriate' talk - demanding that I drop my pants. When I declined he repeated it several more times, and when I still refused he said that maybe he'd 'get the black nurse to drop hers too'.
When the doctor and nurse finally arrived I told them what had been happening. He was worse now than he had been when I brought him in! The doctor said maybe it was partly the environment - some encephalopathic patients improve more quickly in familiar surroundings. However, he admitted that they wouldn't demand that I take him if I felt it wouldn't be safe. I explained that I couldn't possibly spend 24/7 watching him - I have a business to run, sometimes needing to be away for anywhere from a few minutes to a couple hours. How could I possibly handle him considering they didn't dare leave him unattended? They understood, and called the social worker I had met last time.
She explained that he would have to be kept there at the hospital until they could find, possibly, a sort of half-way house, a real rehab where he might have enough stimulation that his mental status would improve, unlike in the tiny room with a watcher. If he improved sufficiently I could still take him home. If he didn't they would find a long term facility.
It is one thing to know 'that day will come' but you always keep hoping it won't, or at least not yet. As they said, they are going to up the dosage of the meds to bring his ammonia down, and maybe in a few days he will be improved enough to bring home... However, it is guaranteed that he has suffered still more brain damage, and even if he gets better, each time this happens he loses more of what makes him himself. Clearly the normal dosage has not been helping enough, or he wouldn't have been so bad when he arrived - so obviously his liver is doing worse than ever. What scares me is that he is worse now than when I brought him in! I had told them he had been on a regular dosage except for the couple days he was short because their pharmacy didn't deliver on time. Why didn't they raise the dosage immediately?
There had been talk about a liver transplant, but as I said to the social worker - what is the point of a transplant now, if his brain is so far gone? What kind of quality of life is that? Her response; that's a decision you'll have to make. I know, but it sucks! We had discussed the choices of being kept on life support - NO! Somehow the idea of being basically brain-dead but relatively healthy physically never came up. We never arranged a health care proxy, or power of attorney. If he doesn't improve radically in the next few days it is going to get a bit complicated, as well as heart breaking.
I feel numb. Yesterday I didn't dare cry until I got home, but even then I only cried briefly. I guess I still feel it is too soon to go into mourning... he isn't dead yet...
Saturday, August 6, 2011
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.