Down, and Up, Hoping For a Steady Rise

Saturday, Jan was back on a ventilator in ICU.

Her blood-oxygen levels weren't doing well. She was uninterested in my reading, her eyelids only flickering when I told her I was there. Most of the time I sat with her, I was wiping away tears with one hand while I held her hand with the other. She didn't "fire" me, she didn't snatch her head away in anger. She seemed not to care.

She went to sleep soundly at about 5 pm, so I left, and went to sit and chat with my sister-in-law and sip wine for a while, then returned to my hotel, and after talking with Bernie, took a sleeping pill and settled in to read for a few minutes and try to rest, try not to stress out about going to visit my increasingly combative mother and take her to church.

At 11 pm or so, the phone rang, startling me out of my doze. It was the hospital; Jan had taken a plunging turn for the worse. They were taking her for a CT-scan to see if they could figure out why she was ... dying. "It's very serious," they told me, "but we'll call you if the situation worsens."

I fell asleep and woke again at 4 am. The phone had not rung, so presumably she hadn't died. I fitfully dozed and had panic attacks until 6, then got up and paced and wanted to puke until 8 am, when I called the hospital and asked them how she was.

Better, they said, but not good. I asked if I should try to rally our Alzheimer-impaired mother to visit her, and the nurse said, "Yes." In other words, it's time to say goodbye.

Since my mother had gone on a rampage about the disappearance of her truck, and was currently in the mode of "Hate My Daughter Sand With a Passion," I called her closest neighbor and told her the news. To my surprise, she told me that Tere wasn't even remembering that Jan had been ill, she was totally obsessed with her vehicles, and for everyone's sake and sanity, would I please stay away.

I was a bit stunned, but they are actually closer to Tere than I am, so I agreed. I went to church, and then, at noon, went to see Jan. When I walked into ICU, I approached Jan's room, and saw that her bed -- was empty. My heart froze, my eyes welled up -- would she have been taken to the morgue so soon?

A few steps more, and I was stunned -- Jan was there, sitting up in a chair beside the bed. Sitting up straight, her face serene.

The nurse, who was putting a blanket on Jan's legs, turned to me with a huge grin and said, "Can you believe this????"

She rallied, she did, and she was simply, simply beautiful to me. I couldn't keep my eyes off her. After about 3 hours, she began to nod off to my reading, and they put her back into her bed.

Monday she was stronger, and wanted me to stay later than usual -- how unusual! And today, she was moved out of ICU, and she was talking -- talking! She used (with help) the potty (and she was annoyed that the nurses took so long to understand what she was wanting) and later, she was talking aloud, in her 'normal' patter, about the "Holy Land" and it having been "200 years" as well as telling the nurses who were moving her, "Wait a minute. I have something to tell you. I have my own Home Showcase."

She was congratulated on that accomplishment by all.

God grant the improvement holds through the night.

Rain and Tears

Sunrise over the ocean?

No, instead it is a streetlight lit automatically over a parking lot during a dark midafternoon thundershower.

They have those things here; at least this week they do. The weather has been very dry for weeks, but this area (can't bring myself to say "we") has had a spate of thundershowers rolling through the area. The sun comes up, the sun is overshadowed by lumpy clouds, the dark gray shreds blow in, and with a light and sound show, rain buckets down like the scenes in the beginning of "The Matrix" or movie scenes of a storm at sea.

I savor the storms when they arrive; we don't have them in the Central Valley, not very often, anyway -- maybe five or six in a decade. While this storm was going on, I was completely countercultural and opened the drapes of the window-wall of my hotel room all the way, turned the chairs to face out and watched the storm play across the hills.

My mother always told me that I was born during a thunderstorm; I've often wondered if there is some connection between that and my overwhelming sleepiness when I start to hear the peals of noise following lightning. I relax, I'm filled with a sense of well-being, I want to curl up and smile, and drift into dreams.

But not like the dreams I had last night, that were the most horrible and ugly and heart-breaking that I have ever had in my life. The emotions of the dream bled over into my waking, so that my chest hurt with the sadness, and just pondering the images of the nightmare turned me to bitter, hopeless tears. I wept through my morning shower, and though I felt less pain after the tears, I was periodically moist-eyed throughout the day.

No thunder-dreams that one. I know the well-spring of that dream: all the emotions that rage and chase each other through my days here. Fury, frustration, guilt, fear, regret, the fleeting wisps of hope, the deep piteous gratitude for passing words of kindness, the disappointment of the low moments -- God, I feel like a war zone, a black and white movie image of the trenches of World War I. Weren't they always in the rain, too? As if the soldiers dug into their deep, gravelike earthen protections in fear and misery needed downpours to drown their wounded as they lay beside them?

I don't mind the rain on my journey here. I wish it would thunder at night loud enough to penetrate this nearly sound-proof hotel room and send me uplifting dreams. Maybe I'd wake in the morning rested and ready to attack the day, instead of going from sadness to horror to awake to the promise of more misery in the daylight.

The update today: Mom's caseworker and I hammered out a "plan" that will allow my mother to stay in her home until she screws up royally enough to unequivocally be sent to a care facility. And Jan had a stomach-feeding tube installed surgically, so that they can get that damned tube out of her poor nose. She was too groggy for me to visit her longer than necessary to find out she was doing all right, so I didn't stick around and read today.

Mom didn't answer her phone when I called her. Oh well.

Day to Day, Remembering

That was my mom and dad, just a couple months after they were married.

Mom has always said that they sat for this photograph because she was feeling sick and faint as they climbed to the top of a lookout tower above the Juniata River, I think just before that river joins the Susquehanna as they make their way to the sea. I used to know the name of it, but I can't recall any more.

Mom was already pregnant with my sister, Jan, when this picture was taken. Dad was handsome, Mom was a hottie. They both still enjoyed dressing snappy for an outing.

I called Mom this evening, rather than go visit her, because I needed a mental health day for myself. Not mentioning that I was in a hotel 12 miles away, I had a nice conversation with her. She knows I visited, but she does not at all realize that it was only yesterday I took her to church. She knows Jan went to the hospital (at least for that moment) but said she was glad she'd heard nothing, as "no news is good news."

Indeed, I had no news for her. Jan is still in the hospital, though out of intensive care, still refusing to eat or drink. Sustained by a tube through her nose to her stomach, Jan is indomitable, fractious, in command, whacking the poor nurses every time they touch her. She is damn mad, and letting us all know it.

I read from Mary Stewart's The Crystal Cave today for over five hours, stopping after each chapter for a water break to soothe my throat. Through some of it, Jan dozed, and when she would awake, startled, my voice was going on and on. Jan is -- although I know she's pissed -- listening to me read. I like to think that hearing me read eases the transition from her dreams to waking. In her dreams, I'll bet she can see and walk and jump and and have great adventures; waking to blindness and weakness must be a horrid experience. "I'm a vegetable," she moaned today after one such waking.

She didn't bop any nurses today, but she still won't so much as taste food or drink. Every touch aggravates the shit out of her, and she is as hostile as a wounded porcupine. Jan wouldn't let me hold her hand or stroke her arm today. But she didn't tell me to "Shut up" or "Get out" or fire me ... I can only take that as a good sign.

A Season to Mourn

This bird is named a "Boat-Tailed Grackle."

In the truncated language of my local dialect, we (at least those of us who didn't just call them blackbirds -- grouping them with red winged blackbirds, blackbirds, starlings, and cowbirds) called them "bow-tails." I always thought it was because their long fanned tails looked like the ends of a big bow tie. But as I learned the real name, I had no idea what boats had to do with the tails of these birds, nor do I at this present time.

What I do know about them is that when they arrive in the spring, you know that winter is finally broken, and hearing their characteristic 'click' and 'buzz' call in the mornings of March or late February mean that violets and troutlilies will soon be blooming, promising another season of new life.

This one was prowling in my mother's yard in Pennsylvania a couple weeks ago. The grass was still green, though a bit parched at that time.

The green of my mother's yard is brown now. They have had no appreciable rainfall in an area where rain is supposed to happen every three days or so at least. Flying in to Central Pennsylvania on a little commuter plane, I looked down and saw not verdant fields and lawns and forests, but ugly brown expanses. Not good.

For a while the weather services were predicting rain for tomorrow, but they've backed off that again. "Well, maybe, but not likely," is the forecast.

Another season of new life. How I wish that there was some bow-tail to herald such for my mother and my sister! But as my mother's lawn has withered, so has her grasp on reality. It's funny, she can still dress herself and keep herself clean, but she can't remember that she's not allowed to drive anymore, or that Jan is in the hospital recovering from two heart attacks. She knows she can't find the keys to her little truck (I removed them all after her license was suspended) but Sunday morning I caught her trying to use the car keys (from the monster station wagon that is inoperable in her garage) to open the truck and drive herself to church. She knows, at least at some level, that she is no longer allowed to drive, but the "core personality" that Alzheimer's is exposing believes that rules are made for "other people." Mother will do what she will, as she has always done.

I took her to church, but it was nerve wracking. She is having a hard time understanding what I say to her. She can't figure out how to do what she needs to do, but she won't admit that she's having problems. After we went to church, I cleaned her kitchen table and her sink, which were filthy. Watching me wipe down her table with paper towelling, she said, "Here, this is what I use," and tried to hand me a disgustingly dirty, many-times-used wad of paper towel. I tried to tell her it was too dirty to use, but she didn't understand. Finally I just took it from her and threw it in the trash, and then scoured her sink with cleanser, trying not to gag.

Each room in the house is in some sort of disarray, with dozens -- maybe hundreds -- of plastic grocery bags filled with unknown contents in every conceivable corner.

Everyone who knows her is scared of what she will do next, because inevitably, her stubbornness and denial are going to run headlong into some sort of disaster.

Sorting Through Feelings

I spent a goodly portion of this day with my mother.

Or rather, with her disease and what little is left of my mother. She repeats the same four conversations over and over, which is understandable, given the traits of Alzheimers. What is hard to take -- as it always was, in sickness or in health with Ma -- is that she cannot shut up. Any silence is for her a mandate to fill the quietude with her own voice.

As I was growing up, she could never understand why I would go to my room and spend hours there, or take off for the woods and spend the whole day puttering about the creek and the honeysuckle thickets. As a visiting adult, I would go to bed early or go sit out on the cool back porch by myself, and she couldn't understand that, either. Now she has given up on understanding anything, and a visit with her is a nonstop barrage of her trying to place blame on someone for Jan's illness, spouting angrily complete fantasies about how good Jan had it at home, how having close friends is not a good idea because they will always betray you, or warped tellings of family history of how everyone wronged her all her life.

Today, sitting at her kitchen table, listening to her rattle on and on, I began to wonder if I had actually neglected my duty to the world by refusing to fight with her when I was young. It took her a full hour and a half to eat a small McDonald's cheeseburger, because she could not shut up long enough to swallow. An hour and a half of the same diatribes, over and over, her mouth half-full of chewed food. I knew that the disease has taken her over, and the simulacrum across from me is not really the person I knew from my birth, but I really wondered if things would be different now if I had stopped hiding from her wrath as a teen and gone head-to-head with her, screaming, "Shut up! Shut up! Shut up! All you do is yap constantly about yourself! You can't shut up for one damn day, or one damn hour unless you're using silence to punish someone! Stop thinking about yourself and shut up and listen to someone else -- or just shut up and let the world rest in quiet for one damn minute!!!!"

Well, I probably would have ended up in a girls' school in Cresson, PA for the outburst, but I still wonder: if I had "taught" her that her self-centered constant rattle was unacceptable 40 years ago, might she not have learned to be still, and so be less of a nightmare for all and sundry now? 'Cause sure as shit, more people than me are being driven batty by her endless filibuster of fantasied wrongs now.

I don't know. I can't go back and change the past. But for the first time in my life, I can see a good reason for interpersonal conflicts. Maybe it's not a good idea to pussyfoot around and not tell people what their faults can do to others.

Visiting Jan in the hospital today, I read her two articles from National Geographic Magazine. She was alert (though unspeaking) through an article about the "Iceman" archeological find; the article on "Swarm Theory" only held her interest about halfway through. I could understand that -- she was awake almost all night resisting attempts to have an oxygen feed mask on her face. She was tired out.

The aversion to the oxygen feed mask I could also understand. I can't even accustom myself to a snorkeling mask. Drives me into a state of near panic. Maybe it's genetic. Okay, let's blame Mom.

Addendum: Not Sleeping

The Old Girl gets up at 3:30 am, having slept all of what, five hours maybe, puffing with adrenaline and regret and trepidation about what is to come.

She gets on a plane by 8 am, arrives at her destination by 8:30 pm, Eastern Time, dog ass tired and ready to die. Can't sleep. Too many questions. Too much adrenaline. Too many uncertainties.

She dozes off at 12:30, but is awakened by 1:15 by a phone ringing.

Adrenaline, adrenaline, adrenaline!!!!!! Who could be calling with what dire news at this time of night??? I leap from the bed, juggle the phone ... and it's a wrong number.

Adrenaline poisoning ruins the rest of the night.

No sleep.

Hoping and praying that all the adrenaline and weariness don't make me have a heart attack myself.

I hate traveling without Bernie.

Reading, That's All

Snow-On-The-Mountain is what I grew up calling this plant.

Looking through the pictures of our summer trip by road Back East this evening, wondering if any of the ones that are on this computer would "do" for this entry, I saw this and thought about my sister's hair, which I remember best as being simply chocolate colored with highlights of copper.

Now, at 60, her hair is mostly gray, though her brows and eyelashes are still chocolate. It's unflatteringly and unevenly cut, because Jan, in our mother's opinion, did not need, ever, to go to a hairdresser to have her hair cut (and so get used to such a process). And in the past 10 years, for whatever reason, Jan decided that having her hair cut was one pain in the ass she didn't want to cooperate with.

So our mother would wait until Jan was deep in an apneac sleep, sneak up on her and cut chunks off before Jan could completely wake up.

I spent much of my day with Jan today, just talking to her, and reading pointless magazine articles to her. Just making sure that she wasn't alone in the hospital noises. She turned her face toward me at first, and though she didn't speak much, she was peaceful until my soporific reading put her to sleep. (Actually, I used to read aloud to my first roommate in college when she asked me to -- when she had insomnia. I was a cure.)

When Jan slept, I took off to run errands or feed myself. When I would return, I'd resume reading. After a tech article in the newspaper about state of the art mini camcorders that are YouTube-friendly, Jan, her hands folded demurely in her lap and staring straight ahead, muttered, "Didn't understand a word of it."

I didn't either, but rejoiced ... she had been listening.

I was also a bratty little sister and read some tasty recipes from the magazines, as well as told her what I had for my lunch (luscious Laskaris Hotdogs). Jan is still refusing to take anything by mouth -- possibly because it's the one thing she still has CONTROL over (and unfortunately, "control" is what our female lineage seems to be all about), but she was salivating as I was talking food.

She's been pattering with her bare feet on the textured cool plastic of the foot of her bed, and making purposeful gestures with her hands that shape something of what she's thinking. She mutters things, makes up things, and talks more than I ever knew her to in the past 15 years ... and she's fixated on three phrases that are like magic words to make people react: 1) "I'm scared." 2) "I'm going to cry myself to sleep." and 3) "I'm so lonely."

Don't get too sympathetic ... Jan is a lifelong drama queen and will play to her audience. Those statements are left behind like dust kitties if we ask her, "What scares you?" or "Why are you going to cry?" or "But we're here, who are you lonely for?"

And then I see that sideways glance from her eyes (even though she can't see) that looks exactly, exactly like the one our Dad had when he thought he had gotten away with something but wasn't quite sure.

It was a good day, and by the time I was wilting (from having no sleep last night, but that's another story), Jan had about had enough of obscure pointless articles for the evening. "Tomorrow," I told Jan, "I'm going to pick up a People magazine. That's got to be more interesting than this stuff."

Thank God, I can say "tomorrow."

Unwelcome Tomorrow

Too many sad entries in this blog, but it's a sad time of life.

My sister had to be put back on a ventilator in ICU after a second heart attack. Both of them have been mild, but they are real, and Jan is weakening. Today when I talked to the hospital staff, she was once again breathing on her own, and a "little more cooperative" ... hope again, with more hopes that our hopes won't be dashed.

I had the nurse in ICU ask Jan if she wanted her sister to come sit with her. The nurse told me that at the mention of my name, Jan's eyes widened noticeably. That's enough of a yes for me; I'm headed back to keep her company tomorrow before the sun is up.

My bag is packed, but unlike the "Jet Plane" song, I'm not ready to go. Being parted from my immediate family, especially Bernie, feels like my heart is being torn to pieces.

The Hard Road Beneath Sparkling Water

In the heat of the late morning, we crossed Utah on I-80, and on this straight stretch across the salt flats, watched the shimmering pool of a mirage on the roadway ahead of us, a false promise of coolness and quenched thirst.

How real it looks! There are reflections of land and sky. With a little imagination, you could visualize children flocking to splash in the puddles, or fishermen floating on boats, casting their lines.

Moving my sister to safety in the group home turned out to be a mirage. We all saw the possibilities, the companionship, the fresh air, the exercise, the nurturing -- we saw them as if we could have held them in our hands and passed them around for everyone to look at and rejoice.

My sister's road was quite different. Though she had been moving towards acceptance of her new home, the discovery of the lump in her breast and subsequent visit to the doctor proved too much. Jan stopped eating or drinking completely, refusing to cooperate, and had to be taken to the hospital for rehydration. People think "developmentally disabled" means "stupid," which Jan is definitely NOT. She knows that a lump in the breast means "breast cancer" and she knows that a surgeon means "operation." She's had the input of television as her entertainment for the past 30 years. I suspect that she dealt with the terror in the only way she knew -- to withdraw: maybe the Terror will pass me by.

In the hospital, re-hydrated, she seemed to rally again, even eating some breakfast. But by midnight, she'd retreated into her shadow world even more deeply (more safely) and could not be roused. They took her to the Intensive Care Unit and put her on a ventilator because her breathing was so shallow.

It wasn't supposed to be like this. She was supposed to get used to the new place, and be taken out to hear new and wonderful things, go to the store with people, the fair, concerts and places where she could exercise a little. Get three square meals a day and put some flesh back on her starved frame. In our mirage, I'd get to shop for things for her for Christmas, silly, useless, nice things that our mother would not have tolerated. Pretty clothes. Soft, soft flannel sheets and a girly comforter to keep her warm. I'd visit her as often as I could afford to go back east, without our mother diving in to keep us apart, able to hug her and hold her and shower kisses on her.

Yesterday I cried for our mirage almost all day.

This morning, her doctor called me from the hospital, and told me she was perkier today, and that they thought she could be taken off the ventilator. "She's probably had a small heart attack," the doctor said, "but she seems to be improving." I made sure the doctor knew that Jan hadn't had any physical exercise at all for nearly two years -- except for moving from her chair to the kitchen table (about 10 steps) or to the bathroom (about the same). Her system is unprepared for Life.

I don't know if she'll survive this. I pray that she will, and that our mirage will someday be a reality.

About two hours after the doctor called me, Jan's caseworker sent me an email. Jan was off the ventilator, and having had the tube removed from her throat, was once again vocal and let the entire ICU nursing staff know that she had fired them for incompetence.

Everyone who knows Jan gave a hearty cheer.

Some Creatures Have It Harder Than Others

At a rest stop in Wyoming, we pulled into a parking space to find the stop inundated with prairie dogs and rabbits.

"No Dogs Allowed" said a big sign in the front of the filthy restrooms. The whole place was decaying, and the vermin had taken over.

There was no doubt that the hapless travelers who used the rest area had been moved to feed the pests, for the beasts immediately approached the car. I did not get out, as vermin creep me out, but I did take pictures.

This foolish animal is trying to look as cute as a meerkat and failing miserably. Prairie dogs are destructive as hell, and like ground squirrels and gophers, can tunnel under a trail and ruin your horse's leg. (Just a couple weeks ago, I was riding my horse and the ground gave way beneath his hoof. Fortunately, we weren't moving fast.)

As we left the area, some prairie dogs came running at the car. I waved my arms to scare them away, but even more perked up and ran toward the slowly moving vehicle. I shouted at them, but they didn't care.

Then I thought of pouring some of my bottled water on them to spook them away from the wheels. At the first splash, the critters bolted -- straight for the water. They clustered, lapping desperately at the little puddle. And that moved me with pity. They live in such an arid climate that any opportunity for water supercedes everything else. You could bait a trap with water and catch a million prairie dogs.

I poured the rest of the bottle out on the ground for their buddies.

Out of Control

That's what you call a jungle, isn't it?

Except that a few short years ago, it was mowed clean, with rows of nursery stock that never sold after my parents retired from the nursery business, the stock allowed to grow tall but always tidy. There wasn't a lot left, especially after townsfolk came to hear that Quay's Nursery was letting people come dig up what they wanted, for free. (In point of fact, I got a number of arborvitae for my house at that time. And a couple dogwood trees.)

But even though they went out of the diggin' business, my parents kept "The Meadow" mowed and neat and inviting, a lovely place for a walk down the hill to the creek. From where I took this picture, you could see all the long way to the end of the property easily. In 1999, I tested a pair of Mountain Horse snow boots by walking down to the meadow and standing on the snow in the shade of a holly tree to see if my feet would get cold. It was all open and lovely then. (No, my feet didn't get cold, not at all -- too bad I didn't have boots like that when I was a kid.)

The last time I was there, Mom and I walked all the way around the meadow and I listened to her talk about all the things she was doing to keep it neat. She had someone mowing with the big tractor for her, but she was still planting hand-raised Japanese maples for donations at her church's "yard sales." I can't remember what year that was, but she just about drove me nuts with her non-stop verbal battering (she would have called it "filling in the gaps in the conversation" because she always thought I was too quiet) and I didn't go back to visit in the flesh until a couple weeks ago.

Now sumac and locust trees have grown up there, and mimosas and silver maples, and poison ivy and nettles and raspberry brambles. Trash plants.

In a strange parallel, the meadow has become as clogged with weed trees and vines as her brain has become stifled and clogged with the Alzheimer's disease.

Today, though I am truly glad to be home, I woke startled to find myself in my own bed. And was immediately depressed. Is it because I know I'm going to have to go back there to find a place for her to live out the rest of her days? Or is it just a reaction to the lack of adrenaline in my system -- I'm not "full on" like I have been for the past month?

I sorted through the various papers and receipts I brought back, put them in folders and filed them away for future reference, and teetered on the brink of tears.

What can I say to my mother, who glimpses reality through a kaleidoscope of shifting images now? The disease has taken over and scrambled her time. It crumbles her knowledge of what is happening minute to minute while it surrounds her brain with cement, burying her, deeper and deeper. All the things that I saw on our road trip, the dust storms, the wild animals ... I find myself wanting to tell my mother about them, like I always did. But she's not there. The only thing present is the disease, which has assumed her form and mocked it with making her forget to eat enough, and which short circuits her words to loop around and around, moving her lips but blocking her ears so she doesn't understand what she hears.

When I was nine, she and Dad cleared the overgrown property they bought and called "The Meadow." They cut down the locust trees, eradicated the poison ivy and the honeysuckle tangles, and built terraced beds down the hill for azaleas, yews, rhododendron, and birch. It was a triumph for them, carving out order from the mess.

This time she has no way out of the jungle.

Day Three: Home, with Plenty of Baggage

Over a thousand miles left their stink on our tires today, in spite of us not waking as early as we wanted.

We gained an hour changing time zones; we tried to keep gas stops and food stops and Howie stops as short as we could. Strangely, we only hit two construction zones that slowed us only down to 65 mph, unlike the aggravating mess of endless road works that lost us a full day on the way East. Huh. Maybe they were trying to tell us something, like "Don't go back East, it's the pits."

We hit the road at 6:30 in Rawlins, Wyoming, and we were home by 8:45 pm. Ooog. Long day, good time.

The travel revelation for the day was that Nevada looks much more interesting and varied and charming after you've spent most of a day driving across Nebraska. In Nevada we saw rain showers and a dust storm, a rich river valley and mountains that could just about be from the moon. In Nebraska, we saw fields of corn and tiny towns and more corn and tiny towns.

Nevada is a welcome sight when California is just the other side of it.

Sadly, Nevada was when I got the call from my sister's house manager. On Wednesday night, when Jan was given her shower, the caregiver noticed that Jan had a lump on one of her breasts. They took her to the doctor the very next day, and subsequently made appointments for Jan for a diagnostic mammogram and a surgeon. Shit. Jan doesn't deserve this.

And then I thought, but if Jan hadn't gone to the group home to live, the lump would never have come to light at all. My poor sister.

Night Two of the Return: Rawlins, Wyoming

I'm so tired my body can't understand that it's exhausted.

We covered 950 miles today, from Davenport, Iowa to Rawlins, Wyoming. Bernie dozed for a while today while I drove out a tankful of gas on the long, long, long, mobius strip of Nebraska. He likes to drive; driving makes me irritable and nervous. Riding as a passenger makes him faintly motion-sick; the only problem I have with being a passenger is the amount of shit I muster around my feet (maps, tourbooks, purse, camera, bottles of water, notebook, etc.)

We're hoping to be home again tomorrow night sometime. I'll drive in Nevada, at least. 80 mph and no challenges, I can do that. Bernie can sleep and then take us through the winding mountain lanes over the Sierras.

Howie continues to be perfect, though I can see that he's a bit tired of the stress of traveling, too. He has a hard time focusing on taking a pee and poop if both his "parents" aren't in sight. He's going to be a case once we're home and one of us has to leave -- or both -- and he's not loaded into the car.

Not wishing to insult Nebraska at all ... the rest stops were lovely, the regularity of I-80's services adequate (except for toilet seat covers, which Nebraskan authorities really ought to consider), and the people were nice ...

God help us, Nebraska looks the same from Omaha to Kearney. That's a lot of hours where everything looks like what you saw five minutes before. Hours. Something like eight or nine hours where everything looks the same as it did five minutes before. Even the road kills of possum, raccoon, and deer are indistinguishable. I had to turn on the radio in order to keep myself in crabby adrenaline for driving. Otherwise, I would have fallen asleep from sheer lack of sensory input. Nice state -- but where do they have a Macy's??

Put that also on the list for Nebraskan legislators. Thank you.

Getting Ahead of Myself

So much happened in the past week that I can barely remember the order of events.

Fine, I'll work backwards and sideways and try to say what has happened.

The capstone that allowed me to sleep last night (see previous entry) was that on Tuesday, when I visited my sister, she had more or less accepted her new venue in the (beautiful, airy, comfortable, cool, filled-with-compassionate-caregivers) group home. She'd gone with the other two girls for a drive and an ice cream run, had two good meals, and walked through the house to sit at the table -- finally trusting staff to guide her and balance her as she traversed the three rooms. Jan is blind, and moving from the prison of her chair in my mother's house to a new domicile has been a study in vertigo and sensory overload for Jan. She's going to be fine there. She even got to pet Howie briefly before she wanted to take a nap.

When Jan arrived at the group home, she was traumatized by the spacial strangeness, and all the unknown voices around her; the transition from the disgustingly stuffy 87 degrees of our mother's house to the air-conditioned breezy venue of the group home. Jan did what she could to object: she refused to eat, drink, or move, and told each caregiver in turn that he or she was fired, as of NOW.

Over the course of the days, I talked to her when I visited, and was moved to tears when I mentioned that Jan had helped teach me to read ... and Jan whispered, "When I was ten." That was when she read to me, when I was three and four and she was ten and eleven. I put my hand on hers, and unexpectedly, she put her other hand on mine and held it.

My God, we haven't had that much closeness since my mother decided Jan shouldn't bother me when I was like ... nine.

Jan's hunger strike continued for the first couple days, and the staff called me and asked me to stop by again and see if I couldn't get her to eat or drink something. I did, of course, and to my surprise, Jan reached for me, put her arms around me, and put her head on my chest, holding me tight.

Again, my God, if she could remember me and trust me after all those years of being kept apart, what all else is stewing there, asking and unanswered in my sister's head?

I rejected the nasty cup the caregivers had been trying to offer Jan to sip from; it was a dumb baby's cup. I asked them for something that didn't have a screw-on top, and after they brought a smooth-lipped cup, I convinced Jan to have two sips. Then I asked for them to put some sugar in the water. Not a lot, just a little. Sugar is a stimulant, and can help with shock. A couple sips at a time, and Jan drank the whole thing. It was a start.

She's gone leaps and bounds ahead now, and is talking up a storm. She has explained to the staff that she has worked for both the FBI and the German Embassy.

As I left yesterday, the House Manager said to me, "Maybe you'll get your sister back now." Please God, maybe I will.

On the Road Again

Davenport, Iowa, after a 14-hour stint.

There are few sensations more satisfying than heading back to California (if you love it, as I do) from Pennsylvania (which is a wellspring of great frustration to me). The mountains and river valleys that I loved and didn't want to leave 20 years ago now seem incredibly claustrophobic (not to mention disgustingly jungly) and as we drove West, and as the hills receded, the sky grew larger to view and it was easier to breathe.

We figuratively pissed on I-80 in its Eastern incarnation and set out from Lewistown, Pennsylvania, seeking the lower interstate 70. Wow. Wide open roads, hardly any other traffic, and good road conditions. We had to add a few miles after Indianapolis to use I-74 to head north to the Mid-Western branch of I-80, but all in all, we made better time with better tempers than we did when we traversed the Eastern leg of 80 a week and a day ago.

Last night I slept deeply for the first time since we made the decision to travel back East. I didn't have nightmares, and woke up to birdsong at 4:30 am. "That's God's Bird," I told Bernie as I sat up. "Telling us it's time to go."

"Can't argue with God's Bird," he said, and we packed up and lit out as fast as we could without getting arrested.

Fait Accompli

June 28, 2007

Today was a day that could just about define the word "stressful."

Today was the day that Adult Protective Services was to get the court order in hand to remove my sister from my mother's care. They wanted me to be there when they took Jan away. (Hence me being in Pennsylvania. Though I've been here a day and a half, I didn't call my mother and let her know -- I was afraid she'd find some way to bully Jan into her car and take off with her. )

We had breakfast at a local restaurant, then decided to go let Bernie's mother know we were in town. We knocked on her door, got no answer. Bernie had to call her on the phone to tell her to come answer her door. When she did, she was quite surprised to find us there.

We filled her in on the situation, and she was glad to hear that Jan was going to a care facility -- she'd thought Jan should be removed some time ago when my mother told her that she tied Jan into her chair so she wouldn't roam through the house while Ma worked outside. God, I hadn't known about that. And then Mother-in-Law offered to go with us when we went to witness Jan's removal. It was perfect. While my mother still believes on a deep level that I am a child who must be dominated, she sees Bernie's mother as a friend.

While we were talking, Mom's lawyer finally returned my call. He gave us the scary news that if Mom told any agency to ignore my power of attorney, it would negate my ability to use it. He advised me to get her bills paid secretly, and set up a payment schedule for them before she could get to the bank and yank my POA.

Off we went to the bank,(in my mother's town) where the teller we spoke with turned out to be a high school classmate of mine -- one who had thought I was crazy but didn't actively dislike me. She set up an impromptu meeting for us with a trust officer to see if a trust for Mom would meet our concerns.

After yet another rendition of my woes, we set up a real appointment for next week. Then I went back to my teller friend and asked her for some checks so that I can pay for some stuff of Mom's out of her account. Before that was done, the case worker from Adult Protective Services called me and let me know she had the court order, but was waiting for one more signature before they went to get Jan.

Back to the teller again, my hands shaking. We got the checks and then, armed with my POA papers, I went to the other two banks where Mom has money squirreled away, and got account numbers and balances -- information the trust dude will need.

Then it was back up the road to the town where we're staying, to wait for more news. Bernie took me to a restaurant for a glass of wine. Just as we placed our order, the APS caseworker called and gave us a time for the intervention. We had time to finish our wine, and then went to get Bernie's mother.

We arrived at my mother's house while the caseworkers were still trying to get my sister to get out of her chair. When we came to the door, Mom didn't know who I was, or Bernie. She did, however, recognize Bernie's mother, who hasn't really changed her looks much in the past 30 years. Bernie's mother, Regina, managed to convince my mother that the specter in her doorway was me. It took about 10 full minutes before my mother believed her. Or at least until she said she did. I'm not sure she really accepted the introduction.

The caseworkers brought in four people to get Jan out. The house was hellishly hot, all closed up. Jan was freaked and refused to get out of the chair that has been her mode of existence for years and years. You have to understand that the chair (a recliner that has seen better days) has been Jan's environment except for bathroom trips, and bedtime, and meals in the kitchen. That's all. Sounds like abuse? Damn right, it is. Blame my mother's decreasing mental state. The dementia that is claiming my mother's brain doesn't want Jan moving around.

Jan refused to budge, and they called a bigass burly police officer to help. After another 20 minutes of Jan's standoff, the policeman picked her up bodily and took her out. She cried, which was pitiful and hurt my heart, but even then I noticed that she didn't cry out for her mother. She just said, "Put me down!"

I followed them to the group home where Jan will actually have 24 hour care, and no one will tie her into a chair or tell her to shut up or call her names -- dear God, how I wanted something like this for her 20 years ago. She was upset, of course. She's blind, and this is the first new environment she's been in since she broke her ankle about 5 years ago. Or was it 6? And that was just for a couple weeks.

Suddenly, from sitting in a damned reclining chair in a stiflingly hot house with a semi-deranged caregiver, Jan was transported to a bright, light house with air conditioning and people dedicated to taking care of her. She looked very young, in spite of her graying hair, like she was nine years old. "I'm scared," she said, and the caregivers surrounded her and assured her that everything would be fine. Before I left her, I took her hand and rubbed her legs and told her we'd be there soon to visit. She stopped crying at that point. I think I'll be back East to visit more often now that she's not trapped in my mother's house, sad as that is to say. Seeing her isolation (okay, let's be up front and call it abuse) was too much for me to bear. I've been trying to get her out of my mother's care since the broken ankle incident.

Once I left Jan in good hands, I went back to Mom's house. She asked the same questions over and over again: "Why did they do this? Will Jan have to stay over night? When are they going to bring her back? They're not going to ruin her, are they? I just got her settled down!"

Deep in the throes of dementia, be it Alzheimers or whatever, my mother can't really understand processes not of her own routine, and the dementia has her paranoid and quite delusional as to her own capabilities and condition. She is so incredibly emaciated that I can hardly believe she still gets around. Her arms look like broomsticks with skin and veins as upholstery.

When it was time for us to get Bernie's mother back home, I asked Mom if she was going to be okay. She said that she would be, and no, she didn't want any food for her evening meal because she wasn't hungry.

Suddenly I wasn't, either.

More Oddly-Interlocked Things Than You Can Shake a Stick At

June 27, 2007

So we made the leap, and shot off in the dark morning air, shivering in the Vibe in spite of our jackets. Full of trepidation, we headed north on Highway 99 to meet the transcontinental Interstate 80, which would take us from California to Pennsylvania.

2673 miles, two adults and a Howie, a tent, bedding, and two scanty bags with just enough clothes to get by. Yes, off we went, and in Reno, Nevada (read into this that we only traveled two hours or less before we had to stop and buy the things I'd forgotten to pack: paper towels, doggie poop bags, doggie treats, and something else that was the most essential on the list but which I have already forgotten again) after we stopped to let Howie do his morning thing, I was bitten twice on the face by mosquitoes. Nothing like traveling while sporting pimple-like structures on the face. Serves me right, I should have been keeping up with my grape seed extract, the taste of which mosquitoes seem to hate.

We stopped for lunch in Winnemucca, where I was bitten on the leg by a fly. Yes, a fly. My skin swelled in a patch about four inches across and burned like fire. Damn flies.

After that, however, it was clear sailing across the empty expanses of Nevada, for hours and hours and hours. Thrills. Highlights? Nightingale Hot Springs. When I once again have unlimited internet access, I must investigate them. The steam rising from them looked like smoke. Got to figure out how to work that into a story somehow.

Hours and hours and hours. I wondered if we would camp for the night in Elko, Nevada, or push on towards Salt Lake; the desire to see the white sea of the Utah salt flats again was irresistible, and we did indeed push on.

We stopped at a rest stop on the far side of Salt Lake City, and when we let Howie out, we were arrested by a sign that said, "Watch for snakes and scorpions". Suddenly camping out didn't seem like a very good idea at all. Instead of looking for campgrounds, we opted to drive for another couple hours to Green River, Wyoming, where there was an affordable small hotel that allowed pets. Pets, no scorpions. It was good.

Remembering that we had once driven from Des Moines, Iowa to Cheyenne, Wyoming in a day's jaunt, we set off in the morning with the goal of getting to Des Moines, to spend the night with Filthy Pikers Cheryl and Terry Haimann. We forgot that the time change works against the traveler who goes from West to East, and we utterly underestimated how much of the busiest parts of the interstate would be messed up due to construction. We missed our ETA in Des Moines by two hours, though along the way, in Wyoming, we did see more pronghorn antelope than we could count. And a moose, grazing in a small pond!

We thought we could get to Pennsylvania in one more day. The miles were right. We were hyped. We got up early and set off ... and then hit so much damn roadwork that we lost three full hours of driving time. And then there was the reduction of speed: west, the limit was 75 mph. East, the best pace was 65. Remember those math questions from junior high about speed and distance traveled? No lie, you can't get as far as fast at 65 mph. Or at 55. Or at 45. Or at "Road Work: 15 MPH."

Exhausted and brain-fried, we stopped in Elysia, Ohio, at a scrumptious little hotel that allowed us to have Howie and only charged $60. We slept there the sleep of the emotionally and physically exhausted, but that was where the coincidences kicked in.

We had free Wi-Fi, and wanted to book our stay at a hotel in Pennsylvania that was in the right town and allowed pets. Bernie called up the hotel's website -- and found that they no longer allowed any pets. Campgrounds in the area did not allow pets. "We're screwed," he said to me.

"Coincidentally" I had just emailed my friend of 47 years, Bill, to let him know we would be in the area. He replied in seconds, because he was on his computer, too. Bill owns an apartment building, and though my next step in the "screwed traveler" occupation was to try to book a hotel some 40 minutes away from where we wanted to be, I flippantly asked if he had an empty apartment we could rent for a week.

The answer was within seconds again. Bill did have an empty apartment. And although we didn't camp out at all as intended, we did have an inflatable air mattress and bedding in the car.

I nominated Bill as Landlord of the Year, and thus, here we are, in an apartment, saving major amounts of dollars, our dog with us, and just spent an hour standing on the porch, cooling off to the feel of a thunderstorm's rain. The apartment is lovely ... and COINCIDENTALLY ... just happens to be three houses up from where we lived when we were still in Pennsylvania. Familiar street, familiar sounds. Too bad all the neighbors are different from 20 years ago.

The houses are the same, though. And so is the beguiling sound of thunder as the evening storms roll in.

Good and Ick

Cleveland. Six hours short of goal.

The cross-country road trip has been both good and bad. We had intended to find campsites and throw up the tent and giggle under the stars, but our first night found us in terrain in which signs exhorted us to check for rattlesnakes and scorpions. Scorpions! Scorpions are funny in comics, but loathsome in any other setting. And they are bugs. They crawl into shit just because they can. Neither of us was happy about the rattlesnake thing, either, but a snake would just as soon avoid something as big as a person; who knows what scorpions would do?

So we pushed on until after dark on the road, and traveled from Ripon, California to Green River, Wyoming, and took a hotel room.

From Green River we made it to Des Moines, Iowa, to spend an all-too-brief visit with Cheryl, Poetry Editor for the Piker Press. (it felt like coming home, but that's a subject for a future post)

Today we basically halved our journey output, due to @#!!#&! (please add your very worst epithets to that symbolic array) construction delays, and thus are brain-fried and ready to rest for a night.

The bad is that we are delayed for a day in reaching our destination.

The good is that these days have allowed us to talk at length about what things need to be done, what things can be done, and what things we actually expect will be done. Had we flown back east, we would have gone from anxiety to panic to turmoil; driving allowed us to go from anxiety to wonder to irritation to wonder to deep discussion to wonder to hating roadwork to wonder to more discussion to ... acceptance of the hard choices we are going to have to make.

Ready to Roll

Today I bought a big-ass tent, big enough for two people and a dog.

We're leaving Sunday morning, probably before the sun is up. I have a veritable library of AAA travel guides, a pump that will plug into my dashboard outlet for the air mattress, and an ugly bag that Bernie can call his own.

The dog food and water are already in the car, though not yet properly stowed. Howie's vaccination record is in the glove box, and he, with a dog's ESP, keeps me in sight every possible minute.

I took Lillian's dad John with us to swim lessons this morning; Lil swam the whole way across the pool first thing, and at the last thing, held her breath well enough to get a toy from the bottom of the pool. Of all the reasons I'm NOT looking forward to this road trip, missing out on the last week of Lil's swim lessons is tops. I've enjoyed them far more than I had expected. After the lesson, John introduced himself to the instructor so that she would not be alarmed at a big strange hairy man picking up one of her students. He's good at that kind of stuff. I wouldn't have thought of that. But then part of me is in denial about making this trip.

Still, I keep on preparing. Tomorrow I'll mow the yards and Alex and I will go give the horse his vaccines, I'll pack the car, and we'll be poised for the adventure.

Tonight when Bernie comes home, we should put up the new tent so that we're not figuring out how to do that after 12 hours on the road. And make sure that the pump works! Extension cord, can't forget the extension cord. I did forget to buy a good flashlight today, dammit. (Tomorrow, I'll buy one tomorrow, put that on the list.)

Temps back in Pennsylvania are supposed to be in the merciful 80's; with the usual humidity, it will seem hotter than 95 degrees out here. I'm taking a cotton gauze outfit for "formal" attire. It's as baggy as a burkah but is about as cool as one can get. And since it's black, it won't show the dirt. The rest of the time I plan on wearing cutoffs and a sausage-shirt (one of those tight spaghetti-strapped deals that doesn't require support garments). It won't be pretty, but they can shut their eyes.

We've talked about what we hope to accomplish, and mostly it's just a fact-finding trip, although we want to at least get Mom's bills on automatic payment so she doesn't have the phone or the electricity shut off. I woke with an adrenaline start this morning realizing that I haven't seen any activity in her checking account for water and garbage pickup for the past three months.

Reading glasses, don't let me forget my reading glasses -- the whole checking the map thing could be nasty without them.

I'll pack two flat sheets that will fold up neatly rather than use a fitted sheet; no problem there with space taken up because the dog will sleep on them while we drive no matter what. One ruglike blanket for How in the tent. Minimal pillows, I'll have to tough it out not having my body pillow. But I suspect I'll be tired enough that I won't give a shit anyway.

I'm surprised that Bernie agreed to the tent thing. Heh. Wait till he sees this monster I bought today.

I want my own damn jet.

There was a time when I enjoyed flying.

That time, however, is long past, and I now absolutely hate it, for a number of reasons.

Number one is the pain. Too many past incidents of back injury have left me uncomfortable with staying in one position for hours at a time. A cross-country trip in an airplane is agonizing. The seats are not comfortable; the fronts are too high for my short legs, and the width of the seat is too small. Hunching my shoulders in and having the circulation cut off in my legs results in a lot of pain.

Number two, the crowding. Obese America loves to be seated next to me and overflow their armrests into my personal space. We decry slaver ships where people were packed into holds, made to be still, with no room to move -- but it's okay for airlines.

The third reason would be airline assholes. They are the ones who overbook flights, treat passengers like they are an unwelcome commodity, and beat up customers' luggage. (And let's not forget the ones who open luggage and steal shit).

Fourth, passenger assholes. People with five carry-ons that push the limits of size restrictions, people who wear enough cologne or perfume to kill half the other passengers, people that decide to make the ticket counter a war zone (when they're only going to lose anyway), and people who can't respect personal space and keep bumping into me. Bumping into me is gross, and makes me very, very irritable. Too bad my mother ingrained in me at an early age that it is not acceptable to say, "Quit bumping into me, you fucking asshole pervert."

Reason number five: the uncertainty. Buy tickets, maybe you will have a seat. Have a connecting flight? Maybe you will have enough time to get from one arriving gate to the next departing gate. (I can't remember how many times I've had to sprint through O'Hare in Chicago to make sure I got on the plane that was to take me home.) Maybe you will have enough room for your carry-on, maybe you will get through the flight without catching some sick traveler's disease, maybe the person in the seat next to you won't be a nightmare.

Six. The smells and tastes. The stink of perfumes is the worst, but the smell and taste of airline "food" is atrocious, also. Airport facilities and food suppliers all use some odiferous rancid oil to cook food. It's horrid -- it all smells and tastes the same: DISGUSTING. And if it isn't that pookey oil, the offerings are saturated with sugar. No wonder the seats are all supplied with barf bags. Okay, so you decline the icky food and breeze past the sugary sodas to an alcoholic beverage ... forget it for a wine drinker. Chardonnay (oakey indigestion inducer), cabernet (the cheaper and more acid the better for the airline), or God help us, white zin -- again the sugar content of soda pop. Blech, ugh, och. Oh, well, of course you can ask for water, and then go stand in a line at the back of the plane and hope that the person in front of you knows how to use the facility without leaving a smelly mess for you to clean up when it comes your turn.

Reason number seven: $$$$$$ Air travel is like health insurance. You pay a lot, and while it may solve your problem, misery is the medium you have to wade through.

I don't want to do it.