I wait for you to breathe.

You don't.






Vernon Schneider
b. July 19th, 1924
d. June 4th, 2007
Requiescat in pace

I wish that LJ-login extension for Firefox worked; I have way too many accounts and this is a pain.


Let's see. Where are we? Too many people visiting. Too, too, too many people. The swarm has died off, but at one point we had ten more people staying here than normally are, including a hyperactive 12-year old boy and a newborn baby. Those were fun times.

Grandpa is on morphine and valium. The other morning his typing machine said "how mch longe". When I showed him my new machetes, he mimed my cutting his throat. He was teasing (I'm astounded, and grateful, at how little his personality has changed, how much he is still himself), but oh, it still hurt.

My father the Asshole, whose initial reaction to the news of my grandfather's diagnosis of ALS was to say "Well, I can't say I'm sad to hear it" has slowly been softening that stance, and today stated to me in a phone call that "Vernon was a good man." His graciousness utterly astounds me. But wait! There's more! He said he'd be willing to attend the funeral, should he be invited. Be floored, people; this is grace and compassion in action.

I'm in a state where I'm just very tired of people, of anybody at all, making any demands on my time. The only people who will get my time cheerfully right now are my grandparents; anyone else who wants my company had best well understand that, oddly enough, I don't share their view that they're doing a wonderful thing for me by gracing me with their presence.

Ugh, I've become bitter, and tired. Or perhaps it's just the whole nearing three a.m. thing, and needing a break from a lot of things and a lot of people and their amazing selfishness regarding a dying man and his stressed-out wife.

Also, am coming down with something. Throat sore for last several days.

I will be surprised if Grandpa is still alive at the end of the month. But then again, the hospice nurse didn't think he would make it through the last weekend, and he did. But weak, so weak. No food. Skin and bones. He's getting some liquid down, but....

Found a picture from a year or so ago of my grandfather's hands.



He worked with his hands, lived by them. They are thinner than that now, bruised and spotted with blood vessels burst under the skin, weak and shaky.

Twenty-two, almost twenty-three, years ago, he carried me from the hospital in one of his big hands.

Maybe we say farewell to those leaving us piece by piece, because that makes it more bearable than the whole.

Hospice nurse gave The Speech today. Since he's not getting down any food or, more importantly water, we are more than likely in his last month now. If he doesn't get any more liquid down, then it's an outlined seven to ten days. (I always thought three, and that figure's accurate as far as it goes-- but since his system has already acclimated to low liquid intake, and since he's not physically exerting himself that much...)

There's sadness, but more relief. He's been ready to go for a while. I just hope she can tell him it's okay for him to go, that she'll be okay.

Moving from his current pain-killers to low-grade morphine.

Also, he hasn't been able to get any food or liquid down except a bit of pudding in the last day or so. We've always known that, due to the progressive nature of the disease and his refusal for a feeding tube, that it would be starvation/dehydration that actually kills him, but suddenly that's no longer such a vague concept and instead an immediate one. The human body simply cannot survive more than a few weeks without sufficient liquid and nourishment.

I don't know what to tell her. She looks to me and asks me what to do with tears in her eyes and, like the nurses, like the hospice social worker, like everyone else, I don't know what to tell her.

Shit.

Colin, I'm sorry I didn't thank you more for your supportive words and cheerfulness. And I'm sorrier it took me two months to know you were gone.

RIP, colinportnuff.

He chokes on everything now. Everything. From water to mashed potatoes. He said after today's lunch, during which he struggled for air for three or four endless minutes, the room silent except for the gurgles and rasps and loud high wheezes, he said he won't eat anymore.

She is at a loss, her face drawn into desolation. Sixty-four years together. Not supposed to end like this. Her every instinct rebels against letting him starve and dehydrate.

There is no getting better, there is no cure, there is no promising medicine or herb.

He's started holding a towel in his mouth to absorb his saliva so he doesn't choke on that as well. It makes him look like a muzzled animal.

It's been a while since I updated; I forget. Or rather I intend to post here and put it off and put it off until the things I would have posted are out of date.

Since the last post I made...

My grandma fell on the outside steps, spraining her finger, breaking her glasses, and bruising her face.

My grandpa fell when transferring to the portable toilet, and since then is no longer capable of standing at all. Hospice has given us a Hoyer lift and I use this several times a day to move him from armchair to toilet to bed and back again.

His speech is also steadily deteriorating. My grandma can't understand most of what he says, and I have difficulty 50% of the time. There's a communications device coming from the MSD association, but I don't know how well he'll take to it-- it's a level of technology he's never used before and doesn't appear to want to.

Spring has come. Flowers have exploded everywhere, and died off in the ensuing heat. I have planted a row of radishes and carrots; the radishes are coming up nicely and the carrots have yet to make an appearance.

My grandparents celebrated their 64th wedding anniversary.

We've developed a case of puppies. A double case, at that-- two golden retriever pups, the roly-poliest, fuzziest, softest baby butter-butts with the saddest eyes I've ever seen. I'm helplessly in love with them. Candy, the darker of the two, thinks my fingers are chew toys.

And last night I had a dream-- two dreams, rather. In one I was back in San Diego, jogging down a tall hill in the morning coolness. As I broke out of the shade of a line of trees and into the sunlight, I took one long stride, and another, barely touching the earth; I opened my arms wide to feel the morning air, and quite naturally, knowing it would happen, I stopped touching the earth at all. I rode the wind out over the glittering Pacific and eventually came back down and landed in a tank of water near Sea World.

In the other dream, my grandfather had had diarrhea that defied the laws of physics as much as my flight did. It was on the walls, the furniture, the floor. I spent the dream scrubbing and scrubbing.

Dreams of flight and dreams of human shit. I suppose there's a deep philosophical truth here, one with the other, the good and the bad.

Mostly I just want to feel that cool morning air on my face again.

Thanksgiving and the associated mad rush of cooking and relatives has come and gone. Despite it being the 27th of November, the sun is out right now, shining bright and clear through the patchy clouds onto the car of the nurse from hospice.

Every other day I wash my grandfather's feet. It's far closer to what Christ is supposed to have done for the apostles than any 13th Sabbath service I ever observed at their church.

There are birds wheeling in a black flock above the eucalyptus trees. I wish he could go outside and see them.

My grandma's going to kill herself with worry long before my grandpa goes.

Time to make lunch.

Hate watching my grandmother cry.

Hate that my grandfather feels guilty that I'm here.


...also, the cat nearly gave me a heart attack when the mouse he had today was not, actually, dead. Little bastard ran straight for me when he let it go. I screamed like the girly-girl I am. (Okay, actually I just yelled "SHIT!")

...possibly connected to the loud-yell-of-shit!, my grandmother wants me to go to church tomorrow. Siiiiiigh.

Random thought for the day:

According to ALSA, David Niven (known to me forever as The Phantom! from the original Pink Panther movies), Charles Mingus, and Dmitri Shostakovich all had ALS (Shostakovich's wiki makes no mention of this, incidentally, but does mention a (mis?)diagnosis of polio...?).

For your downloading and listening pleasure:
Charlie Mingus's "Fables of Faubus"
and an excerpt from Dmitri Shostakovich's Symphony n.12 - Razliv.

Didn't post yesterday due to overall exhaustion-- not from dealing with the grandparents, but with the father, who does his darndest to make my life difficult in all kinds of ways. Yay family.

Driving my grandmother to a doctor's appointment today and the sun had come out. The road was empty (we're out in the country) and stretched out long and straight before us, disappearing into a line of orange and red trees. Beyond the trees the foothills rose up, the dry dead grass a golden color so pale it was almost white. And I looked at the farmhouses and barns out the car windows and I thought to myself that maybe, maybe I'm sort of coming to terms with this region, this city. There is a sort of beauty in the citrus groves and in the brown-gold hills and in the morning fog*.

Shoot. Gotta go pick up cousin from school, or this post would be longer.

*if not so much in the choking smog and crappy air and downtown ghettoes and abandoned city infrastructure...

First off, a little wave to all those folks who know me from my regular journal and have popped on over here. Welcome to the Depressing El Jay of Doooooom! *organ music chords* *Dracula-esque laughter* *bats flitting about the castle*

....*cough* Er, uh, right. Um. Thank you. I mean, for just being here-- like I said, there's no onus at all, I'm not using this as a measure of who my Rilly Tru friends are, but at the same time, it just means a lot that my online friends are willing to listen. So. Thanks, gang.

And now, for today's installment of depressing.


A few months back (before my grandfather's diagnosis) I had a really nasty dream involving my grandparents committing suicide by setting fire to themselves. I know a large part of that dream was fueled by guilt over the fact that I didn't keep in touch with them as well as I should have.

Hm. And now I'm back here living with them. I wonder at times how much I'm doing this because I feel subconsciously guilty. That's not a nice thing to think about yourself.

Anyways, I've just been thinking about the dream a lot lately.

And now, I need a blanket. Or possibly to turn on the heater. Trailer's cold!

About me
I'm twenty-two and recently moved back to my hometown to provide live-in help for my grandparents. My grandfather, who is eighty-two, was recently diagnosed with ALS. My grandmother is eighty-three and has health problems of her own, so while she is doing as much as she can (and more than she should), she needed the help of another set of hands.


My grandfather
My grandfather's progression with this disease has been, from what I know of ALS, fairly rapid. Diagnosed in August, he has already lost almost complete use of his legs and his speech can be hard to understand. Water and most other liquids give him a great deal of trouble with the frequent risk of choking. After a nasty fall a few weeks ago, he's been mostly confined to an armchair ever since, since getting up even to move into his wheelchair can be a struggle. Emotionally, he is depressed and resigned a good deal of the time, but his innate sense of humor has not wholly deserted him. The hardest part for him is just that he hates being unable to do things for himself-- he was a proud and independent man his whole life, who worked with his hands and was always active-- it is a big blow and trial for him in so many ways to have lost all that and to be reliant on others for the smallest day-to-day things.


Thoughts
I don't think there are any 'good' terminal diseases, but ALS is already in my personal ranking as one of the worst. It seems to do so much to take away a person's freedoms and dignity as a human being. I know that there are many responses people have to this disease. I see those who live with it with courage and grace, and I applaud them-- for myself I can manage nothing but horror and anger for this condition which is taking what should have been my grandparents' peaceful, resting years and making them a trial of day-to-day endurance, doctor's appointments, and paperwork. This is a lingering disease-- the prognosis is usually 3-5 years, but just today at a support group I met a man who was diagnosed nineteen years ago and is still kicking.

This is my journal so selfish thoughts are allowed-- dear God, if I ever get a terminal illness... let it be one of the quick ones.

( some of this entry x-posted to als_advocacy )