"You could make a million dollars selling this"

    said April, one of the very attractive young women at Drinking Liberally, about my cocoa portable baklava. Her friend Erin, the one who looks like Audrey Hepburn, agreed. They wanted me to set up at the farmers' market Saturday and said they'd help. More fool I that I didn't go along with the suggestion; I almost but didn't quite say that I still need to focus on my dad, now. Supremely good for morale, though.
    At the nursing home, we watch a lot of Turner Classic Movies. Between Howard Keel musicals yesterday, they showed a bizarre short about Natchez. There was a bit with an old black lady smoking a pipe, with the narrator saying something like "Old Grandma Nelly says, no matter what anybody might say, nobody was ever happier than the colored people in the South before the War." I'm pretty sure they meant the one Between the States. Earlier, there had been a bit about the colored people being the singingest, dancingest folks. It was repugnant beyond belief. I can only assume that no one at TCM listened to the narration before putting it on the air. Served as a freaky introduction to "Show Boat," too.
    Dad is doing well. Monday he got another hour and a half of physical therapy. I didn't actually hear about yesterday's work, but he looks well and seems more lively all the time.
    In my life, time has ground to a stop again. I no longer believe that this means that some young lady is going to fall on me from the trees, since clearly no one from that gender has any interest. But so long as it doesn't mean that any further disasters are coming, I'm good with it.

Good food, bad TV

    Paul came around last night for shrimp boil. Shrimp boil was outstanding; cocoa portable baklava was better still. A good day in the kitchen for the Creepy Old Guy.
    Regardless, Paul had bicycled, and just beat a cloudburst. Unfortunately, my vehicle isn't large enough to put a bike in, so Paul pretty much needed to wait until the rain ended. So we watched really, really bad TV. I don't have cable, but these days the broadcast channels give you extra channels. Here, we get Retro or RTV and This TV. The latter was playing the movie "Convoy"; the former an episode of "Starsky and Hutch." Each was, as Leonard Pinth-Garnell would have said, really really bad. It was a delightful crapfest, and the most normal thing I've done in over three months. Remember: never trust a junkie snitch.

The Good Morning index

    If the economy suddenly rebounds strongly soon, I'm so ahead of the curve. I've posted previously about how seldom people greet me on the trail with "Good morning," opting for just "Morning" instead. I still think it's strange that if they want to economize on syllables, they don't just go with "Hi." Regardless, I've had a run of "Good morning"s lately. Is this because the weather has been temperate lately? Does it mean the economy is ready for an upswing? If so, I'm the new star in economics!
    Dad got an hour and twenty minutes of physical therapy yesterday, his first time getting therapy on Sunday. The therapist, Yasu (sp), was really awesome. Margaret particularly was impressed. Dad was highly exhausted at the end, but I think it did him an awful lot of good. I get more and more hopeful every day.

"What would we do without John?"

    Said Margaret to my dad, who said something similarly uplifting in reply. So it's finally happened: I've become a reliable person. Dang it all to heck; don't let word of this get around.
    Dad kicked ass and took names at physical therapy yesterday. He rode the Nautilus machine (kind of like a recumbent stairstepper) for 26 minutes. Then walked back to his room fairly easily. He feels that putting him on the machine is just lazy on the part of the trainers, but if he looked down at his stick legs, he would realize that job one is building up muscles, and this is much the best way. Regardless, what a difference a week makes! He was a different guy from the deceased person who could barely lift his leg last Saturday. Wish I'd asked somebody to take him off Dilantin a month or more ago.

Correction: Not a Nautilus, but a Biodex Biostep semi-recumbent elliptical machine.

Plotting and planning

    I need to sit down with Dad and discuss whether he wants to come home, or if he's planning on it. Because if he wants to stay in a nursing home, he ought to be in a better one. If he wants rehab, he probably should be in a more committed one. Or at the least we need to work on turning this one into a more committed one. And I need to talk to the lady at the better facility about how much time per day they commit to rehab per patient. And I need to talk to someone at the more convenient and probably better still facility about whether they take diabetic patients and what bed availability is likely to be like around November. (They don't take Medicare patients; November is when his Medicare coverage for rehab runs out.) Ah, decisions, decisions.

Yeah!

    Dad was complaining that he only gets a half hour per day each of occupational and physical therapy. This the guy who less than a week earlier was complaining about being roused from bed for physical therapy at all. We were very, very amused, but also much heartened. I appreciate that I keep saying the same things over and over and over again, more even than any reader could. But I really think we're on the right side of a turning point now.
    Bad news is that his left arm is still swollen from the wholly unnecessary graft there. I have to think he's going to have to go back to the hospital sooner or later to have it removed again. But at least that will be a pretty quick and easy procedure (at least compared to the one he had on his head).

Nothing to eat

    Well, it feels that way. I've been using soft corn tortillas as my bread substitute for years now since the ingredients listing included no gluten ingredients. That, it turns out, was a mistake. Several brands now have specific language that "This is not a gluten-free food" with one adding "Contains wheat" even though the ingredients list STILL doesn't show any wheat or other gluten ingredients. There is one type from one brand (Mission yellow corn, extra thin) which is labeled gluten-free. Of course, Publix only carried those for about a week. I'll be talking to them about that... shortly.

"I'm glad you're here; I have to pee."

    The above from She Who Must Not Be Named, when I arrived at my non-drinking drinking club. I said that I sure hoped that was a non-sequitur. I was tickled to no end.
    Dad is much less groggy. He mostly still slept, but this time he wasn't talking or gesticulating in his sleep. And he ate every crumb of his lunch. And he had already had both occupational and physical therapy. So a pretty good day. Not quite a miracle cure, but a lot of improvement was on view, and hope is still growing.

"I love you"

    A nurse from the nursing home called to say that they were going to DC Dad's Dilantin. I told her I didn't speak medicalese and asked if that meant "discontinue." She apologized and said yes. I just said, "I love you!" It just slipped out; I'm sure she took it in the spirit it was meant. I really thought I was going to have to fight and battle and plot and plan. I never expected to win straight away.
    Now it's really really important for anyone reading this to remind me: if the worst happens and he does have a seizure and dies, it was still the right thing to do. Because the Dilantin was giving him more and more vivid dreams, causing him to act out in his sleep. Sooner or later, he would have tried to walk, hit his head again and we would have started all over. If we would be lucky enough for him to survive another blow to the head.
    Also, progress in physical therapy had stopped. He was well on his way to spending the rest of his life bedridden, requiring nurses to take care of all his bodily functions. This is his chance to get his life back. That said, I'm scared to death. But also feeling more optimistic than any time in this entire adventure. So there.

Indices

    Somebody with a lot of time on their hands needs to create indices for various effects on the body of various foods. My primary concern, of course, is thyroid effects. Because the only food item I can find that unquestionably improves thyroid function, avocado, has a vasoconstrictive (or bad for circulation) effect, that would be my secondary concern. It would be neat to know how much cucumber (vasodilator) to eat to balance a given quantity of avocado. Somebody somewhere must have done this work already, but I have no bright idea how to find it. My Google fu is not what it once was, perhaps. If nobody has done it, though, somebody ought to start. And could probably get rich quick.

Quiet

    Yesterday was pretty quiet at the nursing home. Dad again slept a lot and talked in his sleep a lot. This, however, was finally a Saturday when the promised physical therapy did occur. He got a different physical therapist but she was excellent, too. He again had little energy and didn't perform all that well, but he at least tried and again walked all the way back to the room. She wanted him to stay up in the chair, but he again demurred, completely exhausted. I tried to enlist her in the anti-Dilantin crusade, but as she is almost certainly a temp (not wearing the color-coded facility scrubs, that'll probably be a hard sell.
    He woke a bit after PT, so he and Margaret were able to spend some quality time together. Also, "From Here To Eternity" was on TCM, which was very cool. Still don't know why everybody sings in that movie BUT Sinatra, but there you are.
    The ambulance service sent a bill. I was told that the facility would take care of all ambulance fees. It was just for $50, the part Medicare wouldn't pay. I'm not likely to make a major stink about it compared to all the important stuff. But I'm not well-pleased.

Cold water

    So sister Anne (psychiatrist, formerly worked as staff physician in a county hospital/ home for the aged) says Dilantin has among the best side effects profiles of anti-seizure medications. Also that after surgery like Dad's they like to give it for two years. Color me unhappy with the prospect.
    On the bright side, we get to go see Dad today and tomorrow!

Bad thinking and better

    So OK, back in May Dad had a procedure on his skull and the next day suffered a seizure that left him not breathing for several minutes. Since then, these almost three months later, he's been on Dilantin. It's a perfectly good anti-seizure medication that's also famous for being featured in "One Flew Over the Cuckoo's Nest." I finally looked up the side effects and more or less saw Dad's picture. He has nearly all of them.
    Today was pretty much an echo of Tuesday. Dad would nap and talk aloud in his sleep saying fairly bizarre things. Then he had physical therapy, where he could barely do anything at all as he was so tired and listless. It was then that I asked the therapist if she thought Dilantin could be the problem. She didn't know but suggested I take it up with his nurse so I did.
    I remarked that he had one seizure in 90 years and given the array of side effects which he clearly was experiencing, maybe Dilantin was overkill. She suggested that maybe it was the Dilantin that was preventing him from having seizures. I pointed out again that he isn't epileptic. (I forgot to mention that he had had a CAT scan before they put the graft in his arm (more on this in a minute) but will do so the next time I discuss this with somebody.) She said that they would check his Dilantin levels and she would discuss taking him off it with the doctor, and I thanked her.
    It turns out the graft was completely unnecessary and is never used. Apparently it would have been required by the dialysis facility that he never got a slot for anyway. The dialysis treatment facility he is using has asked that we please send him over wearing button-front shirts so they have access to the catheter on his chest. William is bringing them, but I again feel like an idiot.
    We also got to talk to someone from the dietary staff about the undercooked vegetables. We went back and forth but essentially she said that some people like them highly cooked, some in the middle and some little cooked, so they split the difference and go for the middle. I asked them please to try harder and she said they would.
    Earlier I got to talk to the nurse about Dad's insulin levels. What they had been doing was giving him insulin every time he ate, adding more based on a sliding scale if his blood sugar was high. What they're going to do now is just give it to him if his blood sugar is high (still on a sliding scale).
    Also Dad finally got his hair cut. Looks great, too. Busy, busy day.
    After physical therapy, Dad got back to bed, but Margaret didn't want him to go to sleep, so they sang together. Old, old songs, mostly love songs but also "Down By the Riverside" and "Ol' Man River." I requested "My Blue Heaven," knowing it's his favorite. It was a great idea by Margaret. I'd tell you more about it, but I think I have something in my eye.

Trying

    The nursing home called yesterday to tell me that they are going to start giving Dad a protein supplement. This is what they talked about at our initial meeting. It is universally said to taste terrible, so I'm not optimistic about this plan working out. People in health care have no empathy. I just want to say, "You eat it; then you can tell him how delicious it is." What's wrong with sugar-free ice cream after all?
    I also asked if they were giving him the appetite stimulant, and she said that they are. So with any luck that at least will work. I hope he's feeling and doing better on our visit today. Look forward to it regardless.

NOT motorin'

    When Margaret and I visited Dad yesterday, she got a look at his left wrist and was very scared. There was a clear bandage on it and whatever was under it was just black. When the nurse came in to check his blood sugar, we asked about it. She took it off and his wrist was fine. It had been dried blood; the wound or bruise or whatever it was was all better. So there was a relief.
    We also got to see another physical therapy session. He didn't perform as well as last Thursday. He was very tired and needed a lot of rest between any activity. He at least didn't refuse to do anything, and though he wasn't motorin' he did walk all the way back to his room from the PT room, a few hundred feet at least.
    Then he slept through the rest of the visit. He spoke aloud in his sleep here and then. (Something about all the rats around here and what kind of traps would kill them, so not the nicest dreams either.) He had again barely eaten lunch.
    I really don't know what to do. Things generally seem to be getting better there, but still not good. Margaret doesn't want him to move to the other place (assuming they ever get a bed open) because she doesn't think he would be happy there what with smaller rooms. I think he would be happier with a more competent nursing staff. I guess we'll have to put on a sales job should the bed ever come open. Sigh.

Goodbye to total avocado lifestyle

    While the total avocado lifestyle (which only involved about half an avocado a day) was great when I had carefully eliminated as nearly as possible all stress from my life, it isn't working so good in a more stressful period. Mostly, I just want to punch people all the time. So I'll be giving up the avocado chocolate pudding at breakfast time, and maybe the avocado-cucumber-fruit shake at lunch time. Might help my brain function as well, since avocado is a vasoconstrictor and might be causing my confusion about certain words. (Crape myrtle and welsh rarebit NOT actually the same thing. Interesting brain damage I have, you must admit.)

Cooler heads

    After what-passes-for mature reflection, I considered that there might be an obvious reason Dad didn't get any physical therapy Friday and Saturday. He was out of his pants both days, but in his diaper. Presumably, the idea was to help get the bed sore better. So rather than yell and scream and throw things, I need to get into calm persuasion mode. To wit, again, that he can't poop or pee by himself so he doesn't need to be in the diaper UNLESS he's having PT and only WHILE he's having PT. Also, the best thing for a bed sore is getting out of bed. So this will be my approach. Only if this fails do I start yelling, screaming and throwing things.
    Car problems should be finished today. I needed a new master cylinder, new brake lines, a new tire (but they thoughtfully sold me two) and ball joints to go with the alignment. Getting tired of this stuff, I went ahead and popped for Michelins. Hopefully, I can be trouble-free for at least a few months now.
    Dreams last night were not so much vivid as thorough. I met a lady from Kazakhstan who wrote a Kazakh cookbook. I read the cookbook, then she shot me. Then it didn't hurt so I decided (correctly, by definition) that I had dreamed it. I don't remember any more but I'm pretty sure it got even weirder. Too. many. detective. novels.
    Edit: So much for thinking. They skipped Dad's PT Saturday just because they're fuckups. This. will. stop.

No no no no no

    So after the eventually-happy Thursday, we get... bupkis. Dad got no physical therapy Friday OR Saturday, after we'd been explicitly promised by the rehab director that he would be getting it. I'm reaching or past the end of my patience. I'm trying to keep my anger in check until Monday morning when I can ask for some kind of explanation. But I'm more and more inclined to let loose the hounds of holy hell (or at least regulation) on these people. And call the other facility and beg and plead for a bed.
    On the bright side, at least he's eating.

The dream version

    In the dream version, Dad was also motorin' with a walker. In one instance, he hit a glass coffee table and cut himself up a lot, but for some reason my dream mind just shrugged this off. He was fixed up with stitches and motored off again with a leg like Frankenstein's monster. Then he was motorin' off to some gymnasium I've imagined for the facility. At first it was a huge glass-walled room not entirely unlike their rehab room in real life but bigger and glassier. Then it became a huge underground hockey rink type facility. How I know this I don't know since I could never find it. I kept trying though, including going down a passage that became a tunnel I could only crawl through and which didn't go anywhere anyway.
    I eventually gave up and went back to his room, or a room, in this dream a place with a commodious kitchen. I was preparing untold numbers of vegetables, and thinking "He's getting better; why am I cooking all these vegetables?" Anyway, for a stress-induced lost in a big building dream complete with blood and stitches, it was really surprisingly cheerful.

Motorin'

    Lucky thing nobody reads this anymore or they would kill and eat me for using that subject line. Worse still, I wasn't present for any of the excitement. Because Dad seemed so tired at physical therapy that I left (sister) Anne and (his sweetheart) Margaret to watch him and went back to the room to label clothes. (Don't. even. ask.) Apparently, he got up to walk (I must assume with a walker) and just motored across the room. Anne and Margaret were both extremely heartened. Later, he got himself back into bed with no help, only Anne's encouragement. So a good, an astonishingly good day, and so nice that Anne got to see it on such a brief visit.

Slapstick

    Having had the kind of year you wouldn't wish on a serial killer, I'm having a slapstick week. The water heater has been out all week. The landlady was able to get it working again, and then the circuit breaker for the lights and outlets tripped five times. Meanwhile, my brakes are failing and the pocket in my favorite trousers got a big key-swallowing hole. I'm making do with adding brake fluid frequently so far and I stapled the hole. The electrician is supposed to be coming to run some tests today. Circuit breaker hasn't tripped again since 9 or so last night. Maybe slapstick week is over.
    Dad's speech therapist asked me to share my concerns about his care for her to bring up at his care meeting today, so I wrote her out a couple of pages. Hopefully he has a new advocate now; hopefully she'll be more effective. I also turned in his application at the other facility, so plan B is shaping up, too.
    Anne, William and I went to Delhi Palace for late supper. I completely forgot that they don't have buffet on weeknights, but we made out. I asked for medium spicy and found it pretty hot. Anne arrived late; I warned her, but she ordered spicy. It was. Good supper, though.

Overreacting, I hope

    Yesterday, Dad was eating and said, "I think I'm going to throw up." So I ran to find and bring a receptacle. Though he never did, he started making a B-B-B-B sound repeatedly, interspersing it with "I don't know why I do that." He did the same thing at Baptist once under similar circumstances. I think what's going on is that his colon is so backed up that he doesn't have room for his stomach to expand to take in more food, so he has no appetite. All he had was his soup and his milk, which is to say practically nothing. He also barely ate any lunch (dessert and milk).
    Margaret asked if the B-B-B-B thing was something he was doing or something that happened to him; he said the former. But the "I don't know why I do that" makes it seem at least open to question whether this is him or some kind of seizure. Very scary, regardless.
    The speech therapist and sister Anne were with him this morning and asked me about it. I told the therapist my concerns about this and other issues. She said they were having his care meeting tomorrow and asked me to write down all my concerns for her to bring up there. Finally, this blog pays off.

Wrong again

    I keep forgetting that the old guy's a doctor. While I'm still grateful that Linda brought that no-sugar candy, Dad needs candy with sugar in it for times when his blood sugar is too low. Staff feels that the standard approach to a diabetic with low blood sugar is force-feeding glucose, not understanding that just giving him candy would work better and much less unpleasantly. So I went (at his behest) and got him a bunch of fun-size candy bars. He promises he'll only eat them in low-blood-sugar situations. Of course, Margaret (not being diabetic) isn't so constrained.

The thing with feathers

    Dad seems to be about out of hope. Yesterday, he spilled milk in his bed and dropped cake crumbs all over the sheets, and just didn't care. Last week, dialysis started picking him up early, which should be a good thing. But previously, he had been available for physical or occupational therapy on the mornings of dialysis days (Mon., Wed., Fri.) and the early pickups took him away from this.
    Today I called the dialysis facility to find out what's up. They said that if a patient is in the hospital, they bump the other patients up. I asked them please not to do that with Dad since he desperately needs his physical therapy, and they agreed. So I called Dad and told him. Rather than being thrilled, happy or even satisfied, he just said he would just as well do without the physical therapy. Which makes me sad and worried. I tried to buck him up a bit, and maybe I did.
    I also called the physical therapists and let them know he'd again be available MWF mornings. I also asked them if they could work on getting him out of the diapers when he's in bed since a) he doesn't need them except sometimes when he's standing up and b) he has increasing pain on his butt that might come from wearing the diapers. They at least noted my concern.

Fitness

    Fitness as a concept annoyed me when I was skinny the first time, still annoyed me when I got fat, and still annoys me now that I'm skinny again. The question is: fit for what? Are you going out to the savanna to MMA it up with some hyenas? Do you have to bring down the wooly mammoth alone and barehanded? I'm always running across people jogging out on the Riverwalk. They seldom look as healthy as me, and they seldom seem to have the first idea what they're doing. Few carry water, and most have very bad strides.
    I just spent a few weeks climbing up seven flights of stairs twice a day. I wasn't showing off (there was no one to see, after all); I needed to loosen up my leg tendons due to a flareup of back trouble. Point is that I could do it; I'm not sure that the joggers could. My sense is that if they just threw out their fluoride toothpaste and brushed with baking soda, their thyroids would start working normally. And maybe they would learn that they could keep their weight down just by walking, and leave the jogging for the horses.

Lips and ships

    The other day (the Thurs one), a woman from Physical Therapy came by to take Dad for a walk. As usual, he was tired and would have just as happily skipped it, but he gave it a try. She walked him all the way out to the nearest TV lounge, a considerable distance, then back. He tired and she brought the wheelchair to get him the last of the trip back. She wanted to leave him in the wheelchair through suppertime. I explained that we were leaving shortly and that he had some difficulty getting the staff to come help him get back into bed.
    She came toward me shaking her head, so I sort of had the impression she might disagree. She called the nurse or nurse's aide in and asked him to put Dad into bed after supper, mentioning that the family thought that he had had trouble getting them to help him into bed. This was none of my intention. I didn't mention it so that she could immediately repeat it to the staff, making me look like the bad guy and endangering Dad's future care. I think in future I'll just quit talking. Or ask first, "Before I say anything: are you a complete idiot?"

A Thousand Years of Lamentation

And it was written
that there shall be
a thousand years of lamentation.
But not when it will start
or when it did if it has already.

The Long Run

    Got a call from the nursing home to the effect that Dad's blood sugar had fallen very low in the middle of the night. He was given glucose and it came back. Which is great, and a happy ending, and reflects well on the facility. But. I just don't see any way no matter how far he gets in rehab how he can come home from nursing home care. The only way would be to have 24-hour nursing attendants. Though Dad and Margaret could afford it, those would be some supremely bored nurses about 20 out of 24 hours. Having him stay at a nursing home, but with the greatest degree of independence he can attain makes the most sense. Which. sucks. ass. But it's probably the best that we can hope for.

    Edit: Turns out that they only checked his blood sugar because he felt that it was low and asked them to. And he didn't much appreciate the treatment, which was basically forcing glucose down his throat. But at least it worked. And earlier in the evening, he had an in-out catheterization without having to ask first. So things are improving a little.

Serendipity

    Yesterday, Margaret brought Dad's second wallet, which she had had for some reason for at least the past two and a half months. She brought it because it held Dad's doctor appointment cards, and he thought he had some appointments upcoming which needed canceling. (He was right.) Meanwhile, the dialysis facility needed Dad's Medicare and Blue Cross cards, or copies thereof. For some reason, they called William to ask. For some other reason, he came out to visit rather than just call me on the cell. I looked in Dad's emergency backup wallet, and there were his Medicare and Blue Cross cards, which we never in a million years would have found if Margaret hadn't happened to bring his wallet that day. I ran them down to the dialysis facility for the social worker to copy, and all is well with the world. Serendipity!

Home

    For a long time, this felt like home. That was easy because for decades, I've been living by a simple kind of logic: wherever I am is home. It isn't working anymore. This seems like a strange and alien place. I don't know if this is because I'm becoming a strange and alien person. I got so used to being a useless derelict that I have to get used to being an effective and useful person.
    Or maybe it just sucks being alone. Home may be where the heart is, but the heart is long, long gone.

More of the same

    New month: more of the same. Trying to get a call back from the nursing home, with predictable results. Ready to bash my head into the wall. Might update later if there's anything to update.

    Update: Spoke to the Senior Care Partner. Tried to convey my anger and frustration, but really think I just came across as an asshole. Anyway, she's supposed to talk to staff and get back to me. We'll see if that happens.

    Updatier: I talked to the lady at the other nursing home I wish I'd sent Dad to in the first place. She said that she had worked for several years for the company which owns the facility where he is now and that the attitude there is that the squeaky wheel gets the grease. So at least I'm on the right track. She still doesn't have any openings though, darn it.

    Updatedest: The Senior Care Partner called me back. She said that the people in question had been written up and that she had given Dad her home phone number in the event there were any further problems. She also gave me her cell number (as that one's long distance it wouldn't help Dad). So hopefully thus ends the problem. The poo can be said to have hit the fan.
    Can I say how proud I am that my dad regards me as his fixer? I hope I can live up to it.