So Soon?

"I've got the jerks again," she informed me last night.

And how, she's shaking like a detuned Model-T. Sometimes they're worse than others, this seems to be a bad batch. It's not the severity that has my attention, though, as much as the timing. This round has come a lot sooner on the heels of the last round than typical.

She's only been taking the new med since Monday night. I don't know if that's soon enough to have an effect either way, but I'm keeping an eye on it.

I've said the spasms seem to accompany bouts of imaginary people, but they also seem to accompany blood sugar weirdness. The usual order is - her blood sugar will spike up to 170-180 for a couple of days, and then crash into the 70's for a day, then she'll shake, then she'll spend a couple of days seeing people.

Sometimes the order is different, sometimes symptoms show up at the same time. Sometimes one or another won't show. But they're all relates somehow, and usually, they're all lined up.

I Want a New Drug

It's Sunday morning. I'm listening to the coffee pot crack and gurgle its way to a full pot on one side, and Ethel on the other.

"Emmit?" she calls. "Emmit, what you doin' in there?"

I've muted the television so I can hear he better. "Did she ever get over there?" she asks. "I don't know something something something commode." And then she's snoring again.

It's like listening to one half of a telephone conversation. You think you're following along, and then you hear that one strange word or sentence, and suddenly you wonder if you've really been following at all.

---

My question to the neurologist, what is dementia, turns out not to have a straight-forward answer. The things that can be definitively ruled out, like stroke or Lewy plaques, have been ruled out with CT scans. A couple of other candidates have been ruled out because she does not possess symptoms or conditions required as part of a diagnosis.

What is left is probably, though not absolutely, Alzheimer's, and even if it were one of the other remaining possibilities, the treatment is still the same.

Since the hallucinations have been getting worse, we have a new pill - Seroquel. This is an anti-psychotic medication, with a shotgun-blast of treatable conditions, including schizophrenia, borderline personality disorders, bipolar disorders, autism, epilepsy... damn.

The doc says to ease her into it. Ah, well, time to crack out the pill cutter again.

Black Gold

Ethel's getting ready for her appointment. She does this with bureaucratic speed.

"Can I have a cup of coffee?" she asks, watching me brew the pot.

I hate questions to which the answer is immediately obvious. I swear to God, if I had a stack of Bill Engvall signs, I'd do nothing but hand them out all day.

I bite my tongue a lot... but I miss it this time. "Nope, just brewing it to tease you."

"Huh?" I hate this sound. She makes it so much, I think it's purely reflex at this point, whether she heard and understood you or not.

"Yes, of course you can, Ethel," I reply a little more loudly, "and get your hearing checked."

She won't, of course. She can't go on her own, we'd have to take her. Any time we suggest it she insists that she doesn't need a hearing aid, and if we'd all just quit mumbling...

But she has her coffee. She always has her coffee.

What is Dementia?

I suppose the first question on the table is - does a diagnosis of "dementia" mean "Alzheimer's"? The answer to that is, not always. "Many disorders, some curable, can cause dementia."

I know there's a diagnosis of dementia, but (I'm ashamed to say) I don't know if there's a differential diagnosis on the type of dementia. Fortunately - and spurned by the yard wandering last week - there's a neurologist appointment today. I'll send this question in to the appointment with Mom & Ethel.

Stop Gap

I hate to leave the message at the top of the page as such a sour note, so I'm filling the position with this, even though I don't really have anything to say.

This morning was fairly typical. I made coffee and washed the dishes from the night before while it was brewing. I refilled Ethel's water jug with ice and water, and made her a fresh cup of coffee (insulated cup, with a straw - she likes the straw, though I don't for the life of me know why). I woke her up and gave her the morning pills.

"We" took her blood sugar, and administered her insulin shot. I say "we", but in all honesty it's her fingers that get pricked, I'm just handing her the implements of pain and reading the meter. "My" stake in "we" seems somewhat egocentric... but I digress.

I made her oatmeal and a buttered english muffin. I try to feed her other things, but the last time I did she fussed at me. "I'm sorry, honey, but I just don't like eggs that much," she said. She's alright with sausage biscuits or pancakes as well, but they both take too long to make on a weekday morning when I have to scoot off to work, so weekdays are relegated entirely to oatmeal and english muffins at this point.

I packed her lunch. A bologna sandwich, a fruit cup, some tortilla chips, and a string cheese. Nothing elaborate, whatever will keep in a baby igloo playmate cooler with an ice pack.

She was asleep when I left.

I do hope our company returns. Ethel gets lonely. She's given so much to family over the years, she deserves to have someone come to visit.

And your opinion is important to me because....?

Mom and I have upset Ethel. "Why are you moving that? You're moving it where? DON'T PUT IT THERE! Don't I have any say in this?"

Ethel always resists change - and understandably so - so we usually try to do "major" cleaning or moving of furniture when she's away. Visiting relatives for a week, every so often, for instance. But not this time.

"We're moving your cedar chest into the living room, and moving the sofa into your room," Mom tells Ethel.

"WHY YOU DOIN' THAT?!?" Ethel cries out in exasperation.

Why. Well, let me tell you why. We're doing this because we received some negative feedback from the recent visitors. "The place is filthy," they charge - it's cluttered, not filthy. "There's no place to sit," they charge - which isn't precisely true, but arguing the point is probably an exercise in futility. It's true enough. "The trash hasn't been taken out in a week!" they cry. OK, that's true.

Now, if it pleases the court - we're in the woods. There is no trash service, there is a pickup truck and a run to the dump. My truck has been down with a bad tire. Since the tire went flat, every day has either been too busy, too snowy, too rainy, or I've been sick. It's been a couple of weeks waiting on me to fix it, which I finally did this past weekend. While the truck has been out of service, though, I have been running the trash out to the back of the truck so it's loaded & ready to go once its tire is fixed, until the truck was full. At that point, the trash started backing up - but everything I throw away is "dry". There's no "wet" stuff in the trash to spoil, foul, smell, attract bugs, or such. It's trash, but it's pretty clean trash.

Since I've fixed the tire, it has been raining EVERY SINGLE DAY. Until today, and a trash run was already on the evening's agenda. It gripes me that "somebody" will think it happened because "they" said something. The trash run did not.

The moving of the furniture, though, did. Oh, they'll have places to sit.

"For often as they visit, they can sit on the cedar chest," Ethel grumps. I agree. It's the same thing I'd normally say. But this isn't normal, this is political.

"Oh, no, that isn't good enough," we tell Ethel. "They 'warned' us they were coming back to visit on Thursday. I'll be damned if they won't have a place to sit then."

About the seating arrangements - if "the company" had bothered to let us know they were stopping in, from out of state even, there might have been places to sit. As it is, people hardly ever visit. Ethel, despite my efforts to get her to sit out here in the living room, prefers to stay in bed. She's not sitting out here. There's no company sitting out here. We're in a single-wide trailer, so there's no closet space to speak of. If the seats aren't used for storage, it's just wasted space - in a college-freshman-pragmatic sort of way.

If "the company" is so concerned, and perhaps visited more often than once every couple of years, maybe regular seating would be maintained. Just saying.

I'm not saying there aren't housekeeping issues, there are. But I wake up every morning, medicate & feed Ethel, pack a lunch, go to a full-time job, come back, cook dinner, medicate and feed Ethel, do the dishes - by hand, there's no dishwasher here - put up the leftovers, and where I can I wedge in some online coursework for my certifications. If I don't vacuum often enough, excuse the fuck out of me.

Not to mention feeding myself, medicating my own HBP, and coming to terms with my new, CPAP machine for my new apnea diagnosis.

I appreciate that the uninvited, unannounced company is concerned for Ethel's well-being, but I don't see them around here pitching in on the chores, and they sure as hell didn't ask how full my daily schedule was before offering their opinion.

"They've upset you," Ethel says to Mom. "I don't like when people upset you, what they do to you they do to me."

"I'm not upset, Mom," Mom says to Ethel. "I'm pissed. There's a difference."

Damn straight.

Is it Real, or is it Memorex?

I come home to find the folding chair out, propped at the foot of Ethel's bed - NOT where it was when I left. "How'd this get here?" I query.

"Linda and Patsy came to visit today," she informs. Unexpected company could be real, or it could be invisible friends. She seems sound today, so I'm guessing today the company was real. I'll call Linda in a bit to see.

---

Linda confirms that she and Patsy came by to visit. Patsy used to be a chronic smoker. Though she has quit, it is only after having come down with emphysema. Patsy has just had a "medical thing" related to that, and Linda's up to visit her during recovery. She hopes to visit Ethel again on her way out of town on either Thursday or Friday. (edited to remove ambiguity @ 5:50A 18Mar2009)

"Not Friday," Mom says. "Ethel has a doctor's appointment on Friday."

Of course.

A Horse of a Different Color

Ethel's pretty well behaved this morning, so I'm taking the time to provide a glimpse into the past.

Ethel's never been an intellectual by any stretch. Born in 1920, married to a WWII army man, a housewife and stay-at-home mom of the 50's. She's a product of a time when women weren't expected to be particularly strong academically... but she can work the devil out of a seek-and-find.

This isn't to say that she's stupid. More like mentally unexercised. However you look at it, though, the result is a view of the world that is somewhat child-like. Born from this are statements that are often naive, simplistic, or just flat wrong. And sometimes strange. She's always done this, though, so it makes it hard to know what is "normal for her" and what is mental slippage, and even harder to know when exactly it started.

-----

A few years back we went to Ashville, NC during Christmas to visit the Biltmore Estate. They put on an amazing display of Christmas decorations, and Ethel has always loved to see the lights and the trees of the season.

The Biltmore Estate is the largest private residence in the United Sates. Massive is an understatement, and it is honeycombed with secret passages and stairwells. One could spend weeks in there and not see everything. It's worth the trip to see it once, but be prepared for a long drive. Ashville is a long way from everywhere.

We took the tour of the house. There's a lot of house, so there's a lot of tour. Long days with lots of moving about are tiring for anybody, but especially for older folks. Ethel was just glad to finally be back in the car heading back towards the hotel and the rest that meant.

The way off of the estate takes one up a one-way horse path. It was getting dark, and in the winter, so I assume the horses were stabled at that moment, but the "Watch for Horse and Carriage" signs were along the path. I don't know if it was one of these signs, or our conversation, or simple muse, but it was at this moment that Ethel jumps into the conversation with a new thought.

"Do you know how horses see at night?" she asks us.

---

As I've said, Ethel has always had some notions that aren't exactly on the mark, but they aren't exactly off the mark either, or at least not inexplicably so. It's just the way she is, and we all roll with it. And as I've said, it makes it hard to know exactly when it started, but this is the moment that cemented it in our minds that all was not well.

---

"Do you know how horses see at night?"

"No, mom, how?" my mom asks her mom.

Ethel looks at us, and with the gravity that one delivers any important news, intones, "They have eyes in their knees!"

The car - went - silent. Thick, sticky silent. My mind was whirling this thought around, looking for something to grab it by. Did I hear that wrong? Is there some other way to interpret that than literally? Is there some bizarre possibility that this could be "true" in some sense?

The silence pressed on, as Mom and Sister were doing the same mental juggling. Finally, sister musters, "So, what you're saying is--"

And I can't remember the rest of the question. Mom and I, relieved to have the silence broken and our own thoughts voiced, burst out in laughter.

---

Ethel meant literal eyes, literally in the knees, specifically so they could see in the dark. "My daddy told me that," she insisted. Only we can't find anybody who can verify that. We tried to give every benefit of the doubt. We asked all of her relatives if Great-Grandaddy ever said such a thing. We explored folklore, thinking perhaps it was some form of old wive's tale. We even asked a veterinarian if there was any basis for this.

He said, I quote, "................ what?"

What, indeed.

Phantom Appointments

"I don't want my fluid pill this morning," Ethel tells me.

"Why not?" I know why not, it makes her pee. It's kind of the point, but it controls her HBP, so it's important. Still, if we have to travel, we usually skip it so the car ride is more pleasant for her. Nothing like road vibrations to set off an itchy bladder.

"I have to see the doctor today."

Ahh, I see. Or, rather, I don't - there's no appointments that I've been told about, but I might've missed the memo. I'm scatterbrained like that. When in doubt, check it out.

"Hold on," Mom says, "Let me look at the calendar... no, nothing today."

Ah, well. On with the fluid pill.

This is one of those minor slips of the mind that anyone could make, and in scope it's almost inconsequential, but as part of the larger picture, even the small slips are significant.

Bon Voyage

I go in to give Ethel her morning meds, and she's already up.

"I'm going on a trip," she chuckles.

"That's nice, where ya going?" I ask. She's not going anywhere, of course, but I like to know what's going on in her mind... not that it's always coherent.

"I'm going home!" She's already home, and in bed.

"Wow - so where ya been?"

She turns and looks into the corner and asks, "I don't know, we've been all over, where did we go?"

Her bed is tight up into the corner, there's no room there for a broom to stand, much less a person, but the number of people she conjures from that spot could fill a parade. At least the jerks seemed to have passed quickly this time, so hopefully the visions will, too.

The Jerks

She's vague this morning. Lights on, nobody home, and the jerks have started.

They appear as something between a shiver and a palsy. Our general practitioner can't explain it, so he's sent us to a neurologist. The neurologist can't explain it, either. None of them seem to really think the jerks are directly related to the visions, though we have a 'maybe' of appeasement.

None of them see her every day like I do, either.

We get through the meds and breakfast pretty quickly. It goes faster when I'm not working my way through the crowd of imaginary friends. She's asleep again before I'm out of the door. Hopefully she'll behave today and we won't have another episode of playing in the yard.

Breaking Bread

"Dosquatch!" she calls. It's already been enough of a day, but something still has her tuned up. I go in to see what she needs. "Can I have a piece of bread?"

She's already had dinner, and only eats like a bird anyway. It's odd for her to be hungry again, but I'm not going to deny anyone a snack. "How about an english muffin?" I ask.

She looks at her hands thoughtfully. "I guess that'll be OK."

I fire up the toaster and crack out the butter, and happily brought her the result. "Can you put some of the gravy on it?"

It's already late, and this is so completely random it leaves me momentarily with nothing to say. I finally muster up, "Uhhhh........... gravy?"

She waves towards the sewing machine, "Yeah, right th- where'd it go?" Confusion, then irritation, "OHHHH! I reckon Monkey must've put it up." Monkey is her sister. She's also passed away years ago, but apparently is in town tonight with Grandpa.

"That's alright, I guess this'll be good enough." She takes the muffin, calmly reaches over and tugs the curtains. "Here, eat this, I know you're hungry," and drops the muffin between the bed and the wall.

The Happy Phantom

There are the occasional 'Holy Crap' moments.

Mom got home, and Ethel was out wandering in the yard calling for her husband. He's been dead for years now, but he still "comes to visit" quite often.

My sister has been after me for a while now to document all of this so there's a record for the for the doctors. I'm not quite sure this is what she has in mind.

Ethel is an 89-year-old insulin dependent diabetic. She uses a walker, and cannot get up if she falls down. She's on a fistful of daily medications, not a one of which doesn't have a 'may cause dizziness' sticker. She's already having a 'bad' day, which means the jerks aren't far off, and the stubborn woman has managed to work herself down the stairs so she can go chase ghosts in the yard.

OK, this is new.

And, honestly, the inspiration for this. My hope is that this will be more useful, to somebody, than something as dry as a daily symptom checklist.

"Emmit! Emmit, get on up here!" she's yelling. She'd seen the center cone on the neighbor's satellite dish. The dish has been there for years, but today, it's a hat on Grandpa's head. "He's been sitting down there, all day, and won't come up here and talk to me," she fusses at Mom.

I'm not there to witness this, I'm busy driving like a madman back across town from work. But my sister, who called me, has made it there by this point.

"OK, OK, you go back inside and I'll go look for him," sister says. She won't, there's nobody to look for, but sometimes you just say what's needed to get cooperation.

Lady of the Lake

"You have to stop her," Ethel insists. She's very agitated this morning.

"Stop who?" I ask.

"The little blond weather girl! She's been going up and down the driveway all morning in a metal canoe, and she's letting those kids stand up! What if they fall out?" She looks to me, waiting for an answer.

While I'm still processing this, Ethel launches in again, waving excitedly at the television, "THAT ONE RIGHT THERE! Now how'd she get back to the station so quick?"

Of course, canoes don't go down driveways, the weather girl was never here, and there aren't any kids, but there's no telling her that. Not today, anyway. Some days are better than others.

The hallucinations are always there, like a daydream that won't turn off. What makes a good day vs a bad day is how well she can tell where the visions stop and reality starts. There are other symptoms as well - she has full body spasms that usually show up either a day before or a day after the bad days. She casually announces this as, "I got the jerks again."

When the jerks show up first, you can at least brace for the bad days. This isn't one of those days.