This just keeps getting worse

Since my last update he has been in the VA - the nursing home would not take him back. They are set up for your basic Alzheimer's and/or dementia senior, where the biggest problem is mopping up spills and keeping them from swiping each others desserts - rather like pre-kindergarten. They simply were not prepared for a man in his 60s who is lucid and rational - if very unsteady - one minute, and powerful enough to do damage in a childish fit of rage the next.  I can't say I blame them - the fact that I had been dealing with him single-handedly at home for the past couple years doesn't make it their kind of case.

In the meantime his health has been deteriorating precipitously.  The apparent reason for the latest round of mental deterioration seems to have been a blood infection. Probably acquired it at the little community hospital where he was taken for his second set of staples, but who knows. The VA has had him on antibiotics ever since.  His mentation has been erratic - rising and falling with no apparent reason. Last Tuesday he was barely lucid, and his legs were getting swollen. Last Friday when I went to see him he was grotesquely bloated in the belly, and his legs were worse than before. He was in such pain from the pressure - apparently gas in the gut as well as fluid - he was begging for a sharp something to stick in his belly to relieve the pressure.  I wouldn't do that, obviously, but I did put one of his favorite CDs in the little personal CD player I had brought along, plugged in the headphones and put them on him. Immediately his whole body relaxed and he got a slight smile. His 'watcher' was astonished and said a heartfelt thank you on both of their accounts.

Monday I went in to talk to the doctors and the social worker (she had found an alternative nursing home in MA), and to sign some paperwork.  The paperwork included his health care proxy, and power of attorney. The notary was very good about accepting his 'chicken scratch' - all he is capable of anymore, as sufficient 'evidence of intent' . Happily, also - he was lucid enough to concur vehemently that I should be in charge of both.  So that makes it easier for the doctors to discuss everything with me directly.  

My first test came when I was called about a procedure they had wanted to do, involving putting a tube down his throat to have a look at the back side of his heart - they were concerned that the blood infection might have affected the heart. However, the test would have involved him lying on his poor bloated belly - not good - and further he would have needed partial sedation, which in his case would have also required intubating him so he could breath - with the distinct possibility that they would not be able to un-intubate him afterwards. Not good!!! One of the big no-nos when his dad died was his determination never to allow himself to be put on long term life support with tubes. If he came out of the procedure, even if his heart was found healthy, being stuck with the breathing tubes would have rendered him suicidal.  The other option - changing antibiotics and keeping him on those for another 10-14 days to eliminate any chance of infection was far preferable. I explained the situation to the doctor succinctly and she agreed that I had made the best choice for him. Round one of my newly 'official' duty as health care proxy was a win.

However, he had called complaining that his personal CD player had died, so before I hit the road I stopped at Walmart and picked up a replacement. Unfortunately when I got to the hospital the bloody thing didn't work - wouldn't even turn on.  Aggravated beyond belief since this had been his one solace in all the pain and confusion, I took the players - both the old and the new, and all the batteries & CDs with me when I left.  Once back at the store I took the precaution of buying fresh batteries, just in case somehow old batteries had been mixed with the new. The thing still didn't work, so I took it, the receipt, the new batteries and That receipt and got my money back. Then I went to another store where I found a player that actually works, (I tested it in the parking lot to be sure).

Today I was so worn out - I never sleep well after that trip, and him calling at 10:30 and waking me up didn't help. He must have sounded rational for the nurse to call me at that hour, but once he had me on the phone he made no sense, babbling on about me bringing  pound or two of raw shrimp and a bunch of colas and something else, for him to share with his 'roommate'. He has no roommate - only an orderly or some such to keep an eye on him. I yessed him so I could get him off the phone and called this morning to confirm - no roommate.  

My friend had told me she had the day off, and I was welcome to come hang out with her so since I couldn't focus on my own needed work I decided to go visit and play hooky.  We talked - some about her troubles, some about mine, then got busy cleaning out a shed that badly needed it. Funny how I wanted to dodge my own work, but helping her with hers was fun ;-)

Unfortunately when I got home all H E double hockey sticks had been breaking out. I missed the one doctor (she got off at 4 I only got home at 5:15 - but I did call the ward and got a little caught up. Then one after another other doctors called. Apparently the scan of his gut was inconclusive. They were trying to determine if there was a physical obstruction blocking him, and thus preventing passage (hence the huge swelling) but the contrast dye they needed to really see is bad for hid failing kidneys, so they went without it and didn't learn anything useful. Meanwhile he can't eat or drink, because his intestine isn't moving. That means the usual buildup of toxins is getting worse, because the meds that usually force him to a constant state of diarrhea are not able to do their job. Then the surgeon called to say that a surgical intervention was out of the question - both his liver and kidneys are too compromised. The best they can do at this point is 'keep him comfortable' and hope the enemas and other medical options free up the blockage on their own.

Then he called, sounding down. He was semi-lucid again and aware that this is not a good turn of affairs. The last time doctors talked about 'keeping him comfortable' they were sending him home with a quart of liquid morphine to die. That time I had good health insurance through my job and I got him into Mount Sinai in NYC and he made a comeback. This time it is all different - I have no insurance, and he has run out of options except what the VA can offer. He knows it and is finally really facing the idea that he might not make it to his 61st birthday in December.

Tomorrow I will probably get a call from one doctor or another before I hit the road back up with his new CD player, and maybe they will have some kind of further suggestion or option. Otherwise I am simply going to continue to be honest with him when he is lucid enough to understand, keep him in batteries so he can enjoy the last pleasure he really has - his music - and be there for him. What else can I do?

Another Sleepless night...

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.

OK, now what?

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...
This sucks.

Another week, another crisis

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.

not looking good

As hard as it is to write this, it looks like things are coming to a new crossroads with hubby. Some of this I have copied from an email I already shared with a couple of you, to save time, but there are new matters as well.

On July 1st I had to take him to the ER again because I feared he had sprained an ankle in one of his falls. He was unable to walk, or even crawl properly on his way to the bathroom, and was apparently in pain, but couldn't clearly tell me where he hurt. They discovered a broken toe, possible wrenched hip, and a CAT scan showed several small bleeds in his brain - probably from hitting his head in falls, rather than new strokes, but damage is damage.

Even though I have ensured that he has been taking his meds on schedule, which the VA blood tests affirm, his mind and body are continuing to fail at an accelerating pace. He has flashes of lucidity where I still see glimpses of the man I married, but they are getting fewer, farther between and less clear each time.

Between the stroke, the damage done by his failing liver and the falls, he has trouble with everyday stuff like dressing himself, eating, walking, communicating clearly - you name it.  For example; in the course of being a cabinet maker he used to be able to calculate just about anything in his head - now he cannot come up with the square footage of a room, given the numbers and a pad and pen. Even simpler tasks - sorting a box of his socks - are beyond him.

The fact that he knows what he used to be able to do, and now can't, eats at him, obviously. On his good days he is cheerful, tries to be helpful, and is a joy to be around. On moderate days he spends much of his day sleeping, then comes outside to watch me work. On bad days sometimes he gets cranky as a 6 year old. For example, he'll start demanding beer- which, obviously I cannot give him, though I do get him Busch NA as an occasional treat. Sometimes he is convinced he should be able to get his driver's license back and take off on his beloved motorcycle - this despite his huge balance issues and depleted strength. Often he just wanders around mumbling to himself until he loses his balance and falls and I have to fetch the wheelchair and help him up. He often feels sorry for himself, which I can understand, but his bad attitude becomes hard to tolerate sometimes. Usually he'll rant a while, then fall asleep, remembering nothing of it when he wakes up. Essentially it amounts to early onset dementia.

The VA had been on the verge of considering whether Wayne is a good candidate for a liver transplant,  but as his doctor already told us recently, the ammonia in his blood has given him permanent brain damage. Between that and the trauma from his frequent falls I find it hard to believe they will push for such a risky, not to mention expensive operation, knowing that his quality of life afterward will be so poor.

As of this morning the VA doctor I spoke to is concerned about the practicality of sending him home, as even in the closely monitored confines of his hospital ward he managed to take another fall. I just got off the phone with a VA social worker who went over what our recent home life had been, and it is clear he will not be coming home soon.  She said the physical therapists and doctors will be conferring with the other team members and will get back to me later today with some options.

One possibility is a temporary stay in a rehab facility to try and improve his physical strength and balance enough that he can come home, at least for a while. In the long run, however, it begins to look like a nursing home may be the only answer, and that scares me. He gets so moody and difficult, and I've heard horror stories about the abuse  endured by mentally incompetent patients either from other patients,  through malice, or simply frustrated, overworked staff. I told her (the social worker) about my concerns, and  I'm afraid I broke down in tears but she was very understanding, considerate of all the stress I've been through.

With all I've had to deal with I my own health has finally also suffered - I am in the throes of the worst summer cold I've ever had, barely able to get out of bed for the past 3 days - thank goodness for my laptop - it kept me from feeling completely cut off from the world. This cold hit hard, despite eating well, and taking a carefully selected bunch of supplements. A big part of the problem has been sleep deprivation, as the nights are frequently disrupted (he falls on his way to the bathroom at least 4 times a week).  It was a blessing in disguise that he had to be hospitalized when he did, as I could never have taken care of him in my depleted state.

I am blessed with a great support system, however - at least once a week I take off for a couple hours with one or another of my three girlfriends, or just by myself to Woodstock, to the flea market, or to join the Sunday drumming circle.

Also, since I have had to face the possibility of losing him so many times over the past 9 years, I have had time to accustom myself to thinking ahead to a life without him. It is actually harder to deal with 'losing him' while he is still alive, but not really aware. That is what triggered the tears.

However, though I wish it could have come out differently, I am prepared mentally to carry on alone. I love my little motel and my area, and have no plans to pull up roots or do anything rash. If he does wind up in a nursing home I may take a vacation, but that's about it. Living in such a beautiful place, while there are drawbacks (bears raiding the dumpster for example), is living the dream for me.

Anyway, I won't know for sure until I get that call later today, at which point I'll post a follow up, but I wanted to send this out while my head is relatively clear. If the news is really bad later I may be too flustered or upset to state this so lucidly.

Getting bad

The last few weeks have me scared. Two visits to the VA ER in as many weeks, and he's just getting worse. The ER trips were his idea, so I know he was hurting . The first one was Saturday  two weeks ago. He was having acute abdominal pain and, it turned out when we arrived, a fever. They kept him for two nights. Me they kept for one, on a gurney in an exam room. That way I was accessible to sign permission paperwork if they needed  to operate. Also they were concerned about me trying to drive the two hours to get home at 4 in the morning.

Two days later, after multiple tests and no food, just a glucose drip, they still didn't know what was wrong but he wasn't hurting, so they finally fed him to see if he could eat without ill-effects. When he not only ate it enthusiastically but it caused no pain they sent him home with a bottle of antibiotics for the infection causing the fever, apparently connected with his gall bladder.

During the follow-up with his gastroenterologist everything seemed back to 'normal' and he was even given a scrip for a new sleeping pill for his chronic insomnia.

The day before he was due for the follow up with his primary he was once again in pain and so we went off to the ER again. This time I had a few minutes to call ahead so they had his records pulled and appropriate doctors on standby.. They appreciated the courtesy, since it gave them time to prepare before we arrived.

This time I was able to head for home by 2:30AM while they admitted him. Two more days of nothing to eat because this time the ultrasound had them fearing a blockage in the intestine. Finally they determined that he had simply managed to pass a gallstone, on his own and probably before we even got to the hospital. The pain that sent us there had probably been that passage. No fever this time, no infection. Nothing new to deal with - just a formerly discontinued pill added back to his regimen to help him pee, and another adjustment to his diet. (sigh)

He was already restricted. No alcohol of any kind - a no-brainer, since that is what destroyed his liver in the first place. Low sodium for his blood pressure - easy - we don't use salt much anyway . Low protein to protect his liver - a little tougher since he was raised on meat and potatoes. Happily I had been widening his acceptable food range for years, so it could have been worse. Now, however we also have to go low fat, particularly the high cholesterol type, to avoid triggering another gall bladder attack. He does enjoy the occasional greasy slice of pizza or a hotdog from the local vendor (yuck), but when I described the sort of foods I already customarily serve him - the primary oil I cook with is olive, and he's almost vegetarian already -  they approved. So at least I seem to be doing my part in keeping him healthy.

I do feel a tiny bit less guilty about some of his falls now. He needed assistance every time he had to go to the bathroom, which with his meds is approximately hourly. Even with a professionally trained nurse or orderly helping he managed to take a nasty one, hitting his head on the tiles. Nothing tripped him; as he put it 'all of a sudden I just went down'. They were all set to take him for a head scan but apparently decided he wasn't damaged.

The scary thing is that I've been watching him, observing patterns, and they don't bode well.

When he eats, using the utensils with big rubber handles the VA provided, he does everything with his left hand. That is his dominant hand, but he used to use his right for things like helping to cut food, holding the edge of the plate or pushing food with a piece of bread. Lately it just lies there.

He had been having trouble writing - even unable to sign his name. I made him a printout of the alphabet, like back in grade school, as a guideline to help him relearn. His handwriting did improve a bit with practice, but he only gets through his first name and the first half of his last before he forgets how it goes and I have to help.

Getting up for a middle of the night potty run is never easy - that's when he takes most of his falls - but tonight was scary. He went down almost as soon as he got off the bed, but needed to pee so badly he didn't want to bother trying to get to his feet, refusing any help - he preferred to crawl on all fours. I gave in in the interest of keeping the peace, simply standing close by to help if he required it, however I noticed that his right arm wouldn't support him and his right leg seemed to not cooperate either. I also had to help him aim his butt when he finally made it to the bathroom, or he would have shat on the tub bench instead of in the toilet.

I'm really afraid he had another stroke at some point and has now lost still more of his already limited physical ability. :-(

If he hasn't started improving by the follow-up with Gastro on June 1 I'm going to ask that he be tested. If he is going to require round-the-clock assistance I am going to need help, or he is going to have to live in an assisted care facility. I can't run the business and be full time caregiver at the same time. Thank goodness the powers that be determined that yes, he is completely unemployable, and he has been bumped up from 50% to 100% disability. That should guarantee good care wherever it is going to happen.

Another bit of good news is that the new sleeping pill seems to work. Even though he slept most of the day away yesterday, when I gave him his evening meds, including the newly arrived sleepy pill, within an hour he was out like a light (at about 11PM) and seems to have slept right up to 4:30AM when he needed to go potty. Once that ordeal was over and he was back in bed I held his hand and he fell back to sleep quickly.

Wish I could say the same for myself. After tossing and turning for 45 minutes I gave up in favor of updating this. So here I go, into another day on 4 1/2 hours sleep. Oh joy. Sleep deprivation is such fun.

On top of all that, I had no sooner sat down to take a leak a few minutes ago, when the phone rang at 6:45AM!! It was the woman who had been beaten up by her spouse. She's doing much better, and has been looking after  the cancer guy's dog while he is in the hospital with diverticulitis (yep, it's been a busy week). She had managed to lock herself out of her own room and needed to get ready for work.So I used my key ring to let her in.

Now it is 7:15 - no hope of further sleep, and it promises to be a real warm one, so I need to get busy potting up my newly acquired plants. I may have had to cut way back on the garden this year, but I still need to grow some of my usual, for decoration and food. So lots of tomatoes, basil, one eggplant, and a whole bunch of petunias and geraniums.I'll throw a bunch of nasturtium seeds into the mix, and maybe add some other plants later, but this will do for now.

The room renovations are 2/3 done, but clearly not to be finished today, so the big holiday weekend is a bust. Oh well, at least they will be finished in time for summer business. The inspector checked the electrical work yesterday morning and signed off on it, so today the sheet-rock starts going up. Once that is done and painted we call back the electrician and plumbers to finish hooking everything up and I can add shelves, stock the flatware and plates etc. I already have a table and chairs for one room, and with flea market and yard sale season now in full swing, finding a second set should not be too difficult.

I'll also be getting queen size beds - one per room - to replace the two doubles currently in each. I can always bring in a rollaway if someone needs extra bedding for a child. Two beds were going to be too much for the rooms now anyway. with almost 1/4 of each room now kitchenette. Most folks prefer queen anyway, so that's the way I'm going. It will also help discourage families with multiple kids - a plus, since historically I get less trouble with dogs than children.

So a bit more work - maybe a weeks worth, and voila' - mini-efficiencies. Small steps to self sufficiency. My personal art room will get done eventually, but right now there is simply not enough hours in the day or energy to worry about that. Soon, but not now.

Things are things

Well, he is taking his meds without complaint (well, mostly) and we are waiting for the new batch of nicotine patches to arrive because he is finally willing to give up his little Backwoods cigars. Next week he starts a round of physical therapy that will hopefully help him regain some of his balance and strength. His attitude is much improved as well.

The problem is that his mental faculties are still slipping. He cannot remember things even five minutes after we have discussed them. He loses his train of thought at the slightest distraction - even just my turning down the volume of the radio in the car so I can hear him better will cause him to completely forget what he had been about to say.

He found some paperwork yesterday from after his last DWI was over, telling him he could get his license back. This dated back from before the incident of him driving without said license. He couldn't understand why I kept telling him he was not going to be driving again. The only thing he was thinking about was getting out on the road on his motorcycle - but he was forgetting how heavy it is, and how weak - not to mention unbalanced - he is, and all that on top of being on two different anti-seizure meds. He was frustrated by my inability to 'see reason' - he had the paper saying he could - why did I keep telling him he couldn't? :-(

Somehow I finally got through to him, but chances are we'll go through this again several more times. My best bet is probably to file the paperwork where he won't keep seeing it, triggering another go-round <sigh>

He still doesn't sleep well at night, which means he sleeps away a sizable chunk of the day - a vicious cycle. I'm tired too, because his nocturnal restlessness often wakes me. He's only 60 but looks like his old man did at nearly 70 a couple years before he died - it is scary. I'm not ready to lose him, but....The notion of not having to watch him deteriorate any further, not to have to clean up his messes (he spills things constantly due to inattention and hand tremors that just keep getting worse) The idea of sleeping through the night without being wakened by another crash as he falls on his way to the bathroom again... Sometimes it is so tempting to just wish it was over :-(

Then he pulls me into his arms and it feels so right I know I will just keep trying as long as I can.