where we are

From here:

Moderate dementia: The ability to perform simple daily activities (basic activities of daily living; eg, bathing, dressing, toileting) becomes impaired. Patients cannot learn new information.
Normal environmental and social cues for time and place do not register, increasing disorientation. Because patients cannot effectively use these cues, they may become lost even in familiar surroundings (eg, they cannot find their bedroom or bathroom). Patients remain ambulatory but are at increased risk of falls and accidents due to confusion and poor judgment.
Personality changes may progress. Patients may become irritable, anxious, self-centered, inflexible, or angry more easily, or they may become more passive, with a flat affect, depression, indecisiveness, lack of spontaneity, or general withdrawal from social situations.
Psychotic symptoms may occur. Significant paranoia (eg, specific, often persecutory delusions; generalized suspicion) occurs in about 25% of patients. The most common delusions are beliefs that people are stealing and that a spouse is unfaithful. One particularly poignant delusion results from loss of self-recognition in mirrors; some patients with this delusion worry that strangers have entered the home, but others enjoy the “visitor’s” company. Patients often misidentify other people at this point (eg, thinking their husband is their father or their daughter is their wife).
Behavior disorders may develop. Wandering can be a significant problem, particularly if patients are trying to return to familiar surroundings that no longer exist. Patients may become physically aggressive or agitated or act in sexually inappropriate ways. Sleep patterns are often disorganized.


I think it would be a easier in many ways to live with, and take care of, someone with a physical illness. At least you can talk with them, have them tell you what they need. When you live with someone with dementia, your world becomes an irrational hell.
“Shit! Shit!”… she shouted as I walked her into the eye doctor’s office this afternoon. She had been agitated on the ride in, and I didn’t know if that was the problem or if she had to go to the bathroom. Apparently it was both.
I have found someone, through a volunteer organization, who will come and keep her company for an hour or so once a week so that she can at least feel that she has visitors. She always does better when there are other people around. I’m going to take the volunteer to lunch after Thanksgiving so that we can get to know each other. And then I’ll introduce her to my mother as one of my friends. I’m hoping that they take to each other. It will give me a little break, but mostly it will give my mother something to look forward to.
We know that she will only be getting worse and worse. And we only have this to look forward to:

Severe: Eventually, patients cannot perform the most basic activities (eg, eating, walking) and become totally dependent on other people. Memory for recent and remote events is completely lost, and patients may be unable to recognize even close family members. The ability to walk is variably affected in different dementias but is usually lost in the late stages; patients may become unable to move even while in bed. Patients may become incontinent. Reflex motor function (eg, ability to swallow) is lost, putting patients at risk of dehydration, undernutrition, and aspiration (which increases risk of pneumonia). The combination of immobility and undernutrition increases risk of pressure ulcers. Eventually, patients become mute.
Total functional dependence usually requires that patients be placed in a nursing home or that similar support be implemented in the home. Conscientious nursing care may delay complications (eg, dehydration, undernutrition, aspiration, pressure ulcers). Because many patients cannot describe symptoms to a physician and because elderly patients often have no febrile or leukocytic response to infection, health care practitioners must rely on experience and acumen to detect infections whenever patients appear ill.
End-stage dementia results in coma and death, usually due to infection originating in the respiratory tract, skin, or urinary tract.


That has to be a terrible way to end a long life.

write and wrong

The following post is by MYRLN, a non-blogger who is Kalilily Time’s guest writer every Monday.
WRITE AND WRONG
WRITE:
The Writers Guild of America is on strike, trying to get a fair share of the huge profits companies and producers make off materials like dvd’s and the newly-tapped internet downloading. You see, film and tv companies and their big-shot producers are notoriously greedy and egocentric. They believe they’re the heart of the entertainment industry cuz they front the bucks. Their importance in the process can’t be denied, but they, like many of us, forget that without the writer providing the words, there is nothing. Well…except so-called “reality” shows. In scripted creative endeavors, however, “in the beginning was the word.” (John, I.1)

But writers more often than not get shoved somewhere at the back of the line. Take a look at the opening credits of a movie or tv drama or sitcom or late night show. You’ll see much attention to a host of studio bigs and companies and actors but only a momentary glimpse of who the writers are.
So a strike is a welcome event with the secondary benefit of driving home a very basic point: without writers, there are no words (meaning scripts).
Without words, the big shots have no shows or films. No matter how much money they have.
And that’s right. Write?
WRONG:
Then there is our government. Loosely speaking.

Like Dick Cheney who identified Hugo Chavez as the leader of Peru , not the Venezuela he actually runs. How’s that for pure (but unsurprising) stupidity out of our second in command?
Like G.W. Bush who threatens Congress that if they don’t approve his Attorney General, he’ll leave the post vacant. Like it wasn’t so with Gonzalez in there.
Like Congress which gutlessly folds and gives him what he wants.
Like Prez hopeful, the Senator Hypocrita Clinton who screws up in a recent debate then complains they ganged up on her and lets her campaign claim it was a guys against the girl thing. Yeah, go down that road. That’d qualify you for Prez. And then this week in Iowa, after a supposedly impromptu Q. and A. session, it was discovered that at least one question/questioner was a plant by her campaign. So…how’s she then any different from the current administration?
And the supposed question of waterboarding as torture so ponderously puzzling our elected and appointed pundits. What’s to ask? Wanna know if it is or isn’t, or wanna flat-out insist it isn’t? Then first you must undergo the process and then come back and tell us with a straight face it isn’t. (That especially means you, Senators Feinstein and Schumer and new A.G. Mukasey. No sense adding Dumbya and Darth to the list since they’d lie about having undergone it.)
This government — the Founding Fathers would love to see it in action. Right?
WRONG! They’d have a collective heart attack upon learning how the WORDS they WROTE have been perverted. Or maybe they’d go on strike and start a new country.

of princes and pricks

While Prince (the artist formerly known as) proceeds to alienate his fans (those who made him what he is, whatever he is) by threatening to sue several of his fan web sites for copyright infringement, fans of much less prickly creatives are joining together to support those whose work they admire and share with relish.
Writers are striking and their fans are rallying. Yes, writers have fans, too.
It pretty much started with those formidable Josh Whedon fans (you know, the ones who, each year, raise all that money for Equality Now), who (in L.A. for their annual Serenity fan bash) dropped off some pizzas for their favorite strike-walking writers.
And, in their usual energetically creative fashion, the Whedon warriors launched a new campaign to get fans of popular (and even unpopular) television series to become vocal about the rights of writers in this new digital age.
Josh Whedon, a poetic, prolific, and passionate writer in his own right, blogged it well:

We’re talking about story-telling, the most basic human need. Food? That’s an animal need. Shelter? That’s a luxury item that leads to social grouping, which leads directly to fancy scarves. But human awareness is all about story-telling. The selective narrative of your memory. The story of why the Sky Bully throws lightning at you. From the first, stories, even unspoken, separated us from the other, cooler beasts. And now we’re talking about the stories that define our nation’s popular culture – a huge part of its identity. These are the people that think those up. Working writers.

None of the writers – or anyone – I’ve spoken to have ever heard of fans organizing and supporting a strike the way you guys have. Supporting our right not to entertain you. Seriously, that’s rare. When I showed my wife the banner that went with the pizza scheme, she just said, “These people are gonna be running the world.” Man, I hope she’s right.

I found out from b!X post about fans like this one who are creating graphics that bloggers and other Netizens can display to show their support for the writer’s strike.
I watch an awful lot of television, so I’m thinking if I were to line up my picket placards, they would begin like this:
placards.jpg
Although, on second thought, I should just go with this one:

wga-literate-250.jpg

ups and downs

The server I’m on was down since Friday. That happened when b!X, whose server I’m on, was up in a plane heading for L.A.
The temperature is down, the heat is up.
My stress level is up, my energy is down.
My mother was up on Saturday because we had a visit from my cousin and her husband. Soon after they left, she went down into one of her “episodes.”
My mom is up and down all night long.
I’m sure up for a turn down day.

grateful for the good days

She had a good day, yesterday. No crying or moaning or fright because she didn’t know where she was or what was happening to her. I managed to give her a shower and wash her hair. It was such a beautifully warm day, that later, we went for a walk all the way down the driveway, out into the road, and back. She took a long nap after that.
Dementia is such a roller coaster. That’s why it’s so hard to know if the meds are working. It could be just a day her brain decides to give her a break.
Today, we’re back to the usual, with her waking up afraid and crying because nothing looks familiar.
Yesterday, the good day, she even tried to play a little on her Lowry organ. Sometimes when she plays, I sing along to help her remember the tune.
This morning, as she cried because she was afraid, I sang yesterday’s song for her, again.
Whistle a Happy Tune
Whenever I feel afraid
I hold my head erect
And whistle a happy tune
So no one will suspect
I’m afraid.
While shivering in my shoes
I strike a careless pose
And whistle a happy tune
And no one ever knows
I’m afraid.
The result of this deception
Is very strange to tell
For when I fool the people
I fear I fool myself as well!
I whistle a happy tune
And ev’ry single time
The happiness in the tune
Convinces me that I’m not afraid.
Make believe you’re brave
And the trick will take you far.
You may be as brave
As you make believe you are
You may be as brave
As you make believe you are
While shivering in my shoes
I strike a careless pose
And whistle a happy tune
And no one ever knows,
I’m afraid.
The result of this deception
Is very strange to tell
For when I fool the people
I fear I fool myself as well!
I whistle a happy tune
And ev’ry single time
The happiness in the tune
Convinces me that I’m not afraid.
Make believe you’re brave
And the trick will take you far.
You may be as brave
As you make believe you are….

She’s taking a nap, now. I should be making adjustments in the fleece pants I bought for her, now that it’s getting cold up here on the mountain. I guess I’ll do that now.

what would I take

I’m wondering.
Suppose I had an hour to get me and my mother out of here. Maybe there’s wildfire coming, or maybe some heartless marauders.
In addition to underwear, socks, shoes, and basic clothing, what are the important things that I would gather up in that short period of time I had before the disaster strikes.
Our medications.
Our eyeglasses.
My CPU, since everything important is on there. I never have time to back up stuff on disks, and I can always buy a keyboard and monitor.
My cell phone.
My cat.
My charge cards and our medical cards.
The family photo collage that my mother has hanging on her wall and that she looks at every day.
My mother’s rosary.
The family photo albums.
I would mourn the loss of my books, my bins of yarn and craft supplies, the rest of my clothes, the boxes of memorabilia. But some of that can be replaced, and I can live without the rest.
It’s interesting to me that it’s my CPU that’s most important. It holds just about all the links to the essentials of my life. If there were no electricity to be had, I would be truly lost.
What would you take?

short and sour

The following post is by MYRLN, a non-blogger who is Kalilily Time’s guest writer every Monday.
SHORT AND SOUR
“Great job, Brownie.” With those immortal words from Prez Dumbya to FEMA’s then director, the whole fiasco about the agency’s ineptitude around hurricane Katrina came to light. Since then, many changes have been made. Great Job guy is gone. FEMA’s under Homeland Security.
With the huge outbreak of wildfires in California, attention partly turned to FEMA to see if anything had changed. For the most part, things seemed better, good and effective cooperation between Federal and State governments. So last Tuesday, FEMA held a press conference. Its Deputy Director fielded questions and supplied answers that put FEMA in an overall excellent light. “I’m very happy with FEMA’s response,” he said.
Only one problem with the whole thing: there were no reporters there. The questions all came from FEMA employees posing as reporters. In other words, it was staged. It was all a lie. There was no news conference. Afterwards, when the “great job, Brownie” moment ultimately came and the sham revealed, the White House said FEMA was guilty of an “error in judgment.”
Right…the error being they got caught doing what this administration and its minions do most and best: lying. When will the entire country finally see that the only commitment the Bush administration has had from its inception is to lying? It lied about Iraq, its Attorney Generals, its Defense Secretary, its State Department, its legal advisors. In short, about its EVERY DAMNED WORD OUT OF ITS DAMNED LYING MOUTH! The only pertinent qualification for getting hired by the Bushies is the answer to this question: How well can you lie?
Those who support the Liars Club should understand: their support makes them as guilty as Dumbya and Friends for the serious undermining of this nation’s Constitution and moral underpinnings. You can’t escape that. Your support of liars makes you one, too. All the righteous posturing in the world about “hard truths” and “compassionate conservatism” and the other claptrap you mouth won’t change the heart of the matter which is this: You support Bush? Then you are also a liar. Nothing you say can be trusted or believed. You live on lies.
Get it?

it’s got to be the full moon

I know that the full moon officially was yesterday, but the lunacy caught up with us today.
I’ve had a headache all day that nothing would ease. Of course, my mom was in constant meltdown today, making my headache almost unbearable.
And then the hot water pipes in the basement sprung a leak after I took a shower this evening.
At this moment, I don’t care if the whole blasted house and everyone in it springs a leak. I’m going to Albany tomorrow because if I don’t get out of here for at least 24 hours, I’m going to have a meltdown to end all meltdowns.
I’ve about reached the end of my patience and compassion. So, even when, in a semi-lucid moment she said “Don’t throw me away,” I barely felt a heart tug.
What about the years of my life that I’m “throwing” away — years I’ll never get back. Her life is hardly a life at all. And mine is wasting away.

if only

If only I could feel like that:

I Ask You
Billy Collins
What scene would I want to be enveloped in
more than this one,
an ordinary night at the kitchen table,
floral wallpaper pressing in,
white cabinets full of glass,
the telephone silent,
a pen tilted back in my hand?
It gives me time to think
about all that is going on outside–
leaves gathering in corners,
lichen greening the high grey rocks,
while over the dunes the world sails on,
huge, ocean-going, history bubbling in its wake.
But beyond this table
there is nothing that I need,
not even a job that would allow me to row to work,
or a coffee-colored Aston Martin DB4
with cracked green leather seats.
No, it’s all here,
the clear ovals of a glass of water,
a small crate of oranges, a book on Stalin,
not to mention the odd snarling fish
in a frame on the wall,
and the way these three candles–
each a different height–
are singing in perfect harmony.
So forgive me
if I lower my head now and listen
to the short bass candle as he takes a solo
while my heart
thrums under my shirt–
frog at the edge of a pond–
and my thoughts fly off to a province
made of one enormous sky
and about a million empty branches.


[The above poem is from one of Jim Culleny’s daily poem emails
Speaking of Jim, his final statement at the end of this post on species extinction really hits home:

The truth is the earth doesn’t need us. We’re not that important (religious arguments to the contrary). Life will most likely survive for many millenium. Whether we’re here to enjoy it, is another matter.

Finally, the illusive analectic spinner, Roshi Bob, has a revamped blog and a new post on “Dermatology,Galileo, and Religion.” It begins:

A creationist student of mine with a wart the size of a gumball on the end of his nose recently told me science is overrated and often anathema to God. In the same breath he said he was seeing a dermatologist about the wart.

And if you like that one, check out his other Analectics.

Remember,” says Bob, “It’s always here and now at the Now or Never”

it’s b!x’s birthday

b!X is my son. We didn’t name him that. The name sort of evolved out of his life.
He’s the only son I have, and he lives across this wide county — too far for even birthday visits, although someday, after my caregiving days are over, I just might wind up on his doorstep. Not to stay, of course, but at least to hug.
But for now, it has to be that “check in the mail, buy what you need,” this long-distance birthday best wish, and a comment on his blog. (Maybe the best present he could have gotten, being practically born a Red Sox fan, is the team’s last win, which, here on the East Coast, happened on his birthday.)
So, have a happy birthday, sonbix. Here’s hoping your day is filled with other happy events.