Communion Of Dreams

“I’ve had a very nice time this evening.”
January 17, 2008, 2:22 pm
Filed under: Alzheimer's, Health, Hospice, Predictions, Sleep

With all the dignity and presence of a southern lady, my MIL held her self erect, looked at me and said “I’ve had a very nice time this evening. And dinner was lovely. And your performance, though I’m a little ashamed to admit that I can’t remember exactly what you did.”

“Well, thank you!” I answered. Then I helped her finish up on the commode next to her bed, and carefully laid her down for a nap.

It was 12:45 in the afternoon. She had just finished lunch consisting of a peanut butter & jelly sandwich, Pringles, and some chopped pears. Needless to say, there had been no ‘performance’ by me or anyone else.

* * * * * * * * * * * * * *

“I don’t know how you guys manage it,” said Lisa, the hospice nurse. She had just finished her examination of my MIL, and had been going over what she saw as we talked after. She’d mentioned the option to have an aide come over to sit with my MIL while we got out for a bit.

After my wife and I exchanged glances, I (or maybe it was my wife – these details start to slip away) said that we preferred to not both be gone at the same time at this point. Why? Well, because it feels like the end. We want to make sure one of us at least is here with her.

And it’s not just us. Lisa commented that my MIL had never before looked so ashen, so grey. We agreed that she would come again on Monday, unless we called her sooner.

* * * * * * * * * * * * * *

Her fever spiked about 4 degrees higher than normal last night, just as my wife and the overnight aide we have in three nights a week were getting her to bed. I was washing the dishes when my wife came into the kitchen and told me, on her way to getting a Tylenol tablet for my MIL. I dried my hands and followed her back to the bedroom. We got the extra pill into her, I checked her pulse and the color of her fingernails, had her look at me to see whether she could focus or not.

She couldn’t.

I wondered whether she’d make it through the night.

She could.

* * * * * * * * * * * * * *

“My mother has passed on, but Auntie has taken over for her.”

“Auntie?” asked my wife.

“Yes, Auntie. She has taken over for my mom. I was waiting for my mom to come for me, but she’s passed on, so Auntie has taken over . . .” a pause, uncertain look around the room. “. . . everything.”

“Well, OK.” My wife looked at me. We’d been waiting for this. Together, almost simultaneously we said, “MIL, if she comes for you, you can go with her. It’s OK.”

“It’s OK?”

“Yes, when Auntie, or your mom, or your dad – when they come for you, you can leave with them.”

“I can?”

“You can indeed. Until then, we’re taking care of you here.”

“But if they come, I can go?”

“Yes, you can.”

* * * * * * * * * * * * * *

We met with the social worker for an hour or so yesterday afternoon. She is kind, intelligent, insightful. She offered a lot of suggestions for us to consider, from a respite break (which would take my MIL to a skilled nursing floor at the local hospital for five days), to advice on how to better manage the stresses we’re under.

None of it was useful.

Oh, it was, in the sense that had we not considered those things, it would have been very beneficial to bring it up. And neither my wife nor I were aware of the option for the five-day respite break.

But we’ve managed through these things long enough that I think, honestly, we’re doing about all that can reasonably be done to handle the stresses, to give ourselves (and one another) what breaks we can.

And right now we’re not willing to see my MIL off to the five-day break. Not right now. If she rallies again, and seems stable, then we’ll consider it. But not when things are so shaky with her health. After all we have been through, after all we have done, to let her slip away now in the care of someone else in a strange environment would be just too painful, would feel very much like we had failed to see the thing through to the end.

Neither of us wants that.

* * * * * * * * * * * * * *

As I got the safety rails and straps on the bed in place, my MIL looked up at me, concerned.

“Something wrong? Something bothering you?”

“Well, like I said, I have had a very nice time tonight.”

“Yes, thank you. It is kind of you to say so.”

“But I think I should be going soon. My mother and father have been on a trip, and they are looking for me.”

“And when they come, you can go with them.”

“But if I am sleeping,” she said, that worried look on her face again, “how will I know?”

“If they come looking for you, I will be sure to tell them where you are. I promise.”

And I keep my promises.

* * * * * * * * * * * * * *

Jim Downey

(Cross posted to dKos.) 

Totally tubular!

Via various news outlets over the last couple of days comes word of a new application of carbon nanotube tech: the creation of a new, much more efficient light-absorbing material, creating a “blacker black”. From the Reuters article:

Made from tiny tubes of carbon standing on end, this material is almost 30 times darker than a carbon substance used by the U.S. National Institute of Standards and Technology as the current benchmark of blackness.

And the material is close to the long-sought ideal black, which could absorb all colors of light and reflect none.

“All the light that goes in is basically absorbed,” Pulickel Ajayan, who led the research team at Rice University in Houston, said in a telephone interview. “It is almost pushing the limit of how much light can be absorbed into one material.”

This is the kind of tech that I envisioned for the light-absorbing material used in the holo-theatre on the Hawking in Communion of Dreams. My notion there was that the tech would allow for a ‘cleaner’ presentation environment, more suitable to the artistic application of the holographic technology in use. I also figured that the ‘stealth suit’ tech in use by the military (referenced in that scene, and used later in the book) would be a similar application of the same basic tech.

Whenever you write SF, you have to make certain assumptions about how future technology will develop, and how it will be applied. Some authors are perfectly happy to just use a technobable approach, others keep true to a given tech but not go into a lot of detail. I tried to stipulate a certain base of technology, then develop it and use it in a consistent fashion, and explain it where it seemed appropriate.

One thing I would have liked to use, but just couldn’t quite make ‘fit’ in Communion was the kind of space elevator technology perhaps best explored by Arthur C. Clarke in his Hugo Award-winning novel The Fountains of Paradise. Well, maybe I’m just most familiar with that book – certainly the technology has long been used by other authors, and the basic concept has been around for over a century.

Anyway, one of the reasons that this development of a “blacker black” is so interesting is that it is one more step in the process of learning how to create and manipulate carbon nanotubes. To make the super-efficient light-absorbing material, the scientists had to get all the nanotubes to line up almost perfectly side-by side. This is not an easy thing to do when you are dealing with materials which are about one millionth of the thickness of a human hair.

See, the biggest technological problem currently faced by anyone interested in making a space elevator is the development of a sufficiently-strong tensile material to use as a cable or ribbon anchoring the elevator to the Earth. The folks at the LiftPort Group have a lot of good information on this. Carbon nanotubes are frequently considered the best bet for this material, yet the production of sufficiently strong nanotube ribbon in enough quantity to be cost effective has proven to be very problematic. Clarke knew this back in 1979 when he wrote The Fountains of Paradise, and he put considerable effort into explaining the problem and showing how the technological breakthrough of his ‘mono-dimensional diamond hyperfilament’ was essential to the development of the first space elevator.

This is how I see this kind of technology (really, most kinds of technology) being developed. First, the basic discovery is made. Then people start to figure out how to make and manipulate it in rather crude ways. Engineering problems are overcome, bit by bit, and new applications of the material are found and cost-effective production facilities built. Over time, more breakthroughs are made in engineering and economics, and more applications are found. Eventually the technological and industrial base is so well developed that something like a space elevator becomes not just feasible, but practical from an economic point of view.

So, rejoice – that “blacker black” announced this week isn’t just some quirky geek toy – it another (very important) step to a wonderful future.

Jim Downey

Situation normal –
January 15, 2008, 12:32 pm
Filed under: Alzheimer's, Book Conservation, Health, Hospice, Predictions, Preparedness, Sleep

(This is something of a follow-up to yesterday’s post.)

My MIL made it through the night. And seems to be holding her own today. But her fingernails are still blue, breathing noticeably labored. To be perfectly honest, I hope the end comes quickly and with ease for her. If that sounds horrid, or cold, or heartless – well, I’d say you haven’t been paying attention. I am none of those things.

We’re trying to keep things as ‘normal’ as we can, to maintain our usual schedule, get my MIL up at her usual time, have meals as planned, all the normal routines. This might be a bit absurd – it feels like it to me – but consistency really does give comfort to someone with Alzheimer’s. And while other health factors are now in action which will likely end her life soon, she is still very much an Alzheimer’s patient.

But I am changing my schedule a bit, canceling meetings with clients, postponing this or that activity to make sure either my wife or myself are always here. We had our usual ‘respite’ break scheduled for this Thursday afternoon, but I worry about leaving the respite sitter here alone with my MIL. My clients have all been understanding about this, which is good. As I told a friend this morning, there are advantages to being a skilled craftsman in an unusual profession.

So, we wait, pretending that things are normal. Until they’re not.

Jim Downey

Getting close.
January 14, 2008, 9:47 pm
Filed under: Alzheimer's, Health, Hospice, Predictions, Sleep

It’s hard to say when the end will come. But we must be getting close.

How close? Days. Perhaps just hours.

Why do I say this?

Instinct. Well, that and lots and lots of small clues, details that add up to one probability, details that probably most wouldn’t notice.

But among the little things are some big mile-markers. The last few days, my MIL has slept between 18 and 20 hours per day. When awake, she breathes with some labor, and she regularly shows signs of cyanosis. Her confusion is noticeably worse.

Couple that with what Lisa, the Hospice nurse, noted on her last visit, and I’ve been mentally reviewing what we need to do, what we need to look out for, what I will need to tell the family. I worry that I have cried “wolf” too many times, in my effort to keep everyone informed. Well, better that than a misguided attempt at secrecy, I suppose.

So, I re-read all my posts on this subject. And went through, once again, Dying at Home.

I’m about as ready as I can be.

I hope.

Jim Downey

Wash away your troubles, wash away your cares.
January 14, 2008, 10:32 am
Filed under: Health, NPR, Predictions, Science, Science Fiction, Writing stuff

Organ transplantation used to be purely the stuff of Science Fiction. Now it is fairly routine, though still problematic due to the need for powerful immunosuppressants in most cases in order to avoid rejection. And there is a constant need for donor organs, which has also led to a couple of other staples of Science Fiction: cloning and organ farms.

[Mild Spoiler in next paragraph.]

I use both cloning and organ farming as a plot element in Communion of Dreams, which is revealed with the discovery of Chu Ling’s real history. Scientists have been working on cloning replacement organs, and there have been fairly solid reports of real organ farming (harvested from executed prisoners) to come out of China (one of the reasons that I used China as Chu Ling’s home). But cloning organs hasn’t been solved yet, and even if you have vast sources of donor organs, transplantation is still problematic due to tissue rejection.

Thankfully, scientists tend to be more innovative than writers, and have sought other solutions to the problem of replacement organs. One case I heard about last night on NPR’s All Things Considered uses an actual solution containing an active ingredient in shampoo:

Researchers Grow a Beating Heart

A custom-built replacement organ sounds like science fiction, but researchers working in Minnesota have figured out a way to construct a beating rat heart in the lab.


Taylor and her colleagues knew that when nature builds a heart, the cells attach to a kind of scaffold, or frame, made of things like proteins. “It’s basically what’s underneath all of the cells, the tough part that the cells make to hold each other together,” she says.

The researchers decided to see if they could take a dead heart and remove all of its cells, leaving this scaffold behind. The scientists thought they could then use the scaffold to construct a new heart out of healthy cells.

How did they remove all the original cells? With soap:

He tried enzymes, but they dissolved the heart. Other chemicals made the heart swell and change shape. Then one day, Ott grabbed a chemical known as SDS. “It’s a regular component of shampoo,” he says. “It’s a soap.”

At first nothing seemed to happen. Then, patches on the heart began to turn white. The red part, the meaty part, was disappearing.

“You can see the detergent working and making the heart literally translucent so it turns into a jellyfish sort of appearance,” says Ott, who explains that it looks just like a jellyfish shaped like a heart, with all the organ’s intricate 3-D structures.

Read the whole thing, and there is video there as well showing the process. Simply fascinating.

This is the thing that I love about science – a willingness to try crazy ideas, to experiment, to learn and then apply that learning to new problems in ways which could not have been foreseen at the start. And it is the thing I envy about science, because had I proposed such a procedure/technique in my book, it would have been considered absurd and dismissed by most readers.

Bravo to the scientists and researchers.

Jim Downey

Bits and pieces.
January 12, 2008, 10:59 am
Filed under: Alzheimer's, Astronomy, Bad Astronomy, Carl Sagan, Health, Hospice, NASA, Phil Plait, Science, Space, Titan

Phil Plait, the Bad Astronomer, has been at the American Astronomical Society meeting in Austen most of this week, and has had a wonderful series of posts about the meeting. He just posted the final one this morning (though there will undoubtedly be follow-up posts once he is home as sorted things out). You can find the whole series on his blog.

* * * * * * *

Jacob sent me this note:

Not exactly related to Communion aside from “tholins”, but I thought you’d be interested.

It is interesting to see that these complex organic molecules have been found in such abundance. The term tholin was coined by Carl Sagan in his early writings about Titan, and I discuss the material extensively in Communion of Dreams (if you haven’t read it -and if not, why not?).

~~~ Thanks, Jacob!

* * * * * * *

Speaking of notes, I got this nice one from Carl:

I just wanted to say that I’ve truly enjoyed your posts since you’ve joined UTI and your novel is top-notch. I’m not a big sci-fi fan, but your characters and description held me all the way through.

* * * * * * *

A brief update on my MIL’s condition: the visit from the hospice nurse on Thursday confirmed what we’d seen this week – continued deterioration. Her BP is very low, pulse weak, and heart rate very high (all worse than they were the previous week), and her lungs have diminished capacity and evidence of fluid. Once again we have tweaked her meds and treatment procedures, but this is mostly just an effort to keep her as comfortable as possible. I think part of the exhaustion my wife and I feel is just ongoing anticipation.

I’ll keep you posted.

* * * * * * *

Jim Downey

Stellar evolution.
January 9, 2008, 11:06 am
Filed under: A.P.O.D., Alzheimer's, Astronomy, Carl Sagan, Hospice, Science, Sir Arthur Eddington, Space

I commented via email to a close friend yesterday about the persistent fever my MIL has been running, 2 to 2.5 degrees above her normal. We’d seen fevers come and go for the last several months, but this one seems to have settled in for a while. I got back this:

Any particular reason for it, or is she just being like a star that’s going into its final flameout?

* * * * * * * * * * * * *

Like my friend, I grew up after the basic mechanisms of stellar evolution were pretty well understood. What I learned long ago, and seems to still hold basically true is this: stars in the main sequence will develop, go through an initial process of fusion converting hydrogen into helium, and then will evolve one of several ways depending upon initial mass. Small to medium-sized stars will make it into the helium fusion phase (primarily producing oxygen, nitrogen and carbon), before burning out and eventually becoming a white dwarf. Larger stars can go on to greatness, however, and in the sequence of their lives (including supernova) produce all the natural elements we know in a process known as nucleosynthesis. Either way, massive amounts of material are stripped away from the star and disseminated out into the universe through explosion, solar wind, and other similar mechanisms.

* * * * * * * * * * * * *

What is oldest, lasts longest. That is the basic equation to understanding Alzheimer’s.

Generalizing: First, the person with Alzheimer’s will lose the ability to learn new skills. Then the most recent memories will slip, and each succeeding layer of memory acquired in their life will melt away. Metaphorically, they are being deconstructed – like some great skyscraper which is slowly dismantled from the top down, floor by floor. Compare this to other diseases and injuries, which are more like an implosion of consciousness, collapsing in on itself all at once.

Because of the way the disease progresses, layer after layer of experience and memory being peeled away, the patient regresses through life, becoming once again a child in many ways. This is likely the origin of the notion that the elderly experience a “second childhood” with dementia.

* * * * * * * * * * * * *

Looking back over the last three or four months, it has been a difficult time. I read the posts I’ve made here on the topic, and am frankly surprised that things have been as bad as they have been for as long as they have been. No wonder I am exhausted, even with the extra help we’re getting thanks to Hospice.

Yesterday was a bad day. Whether because of the fever, or just her deteriorating condition, my MIL was really in a state of constant confusion about everything starting first thing in the morning. Nothing was easy, and she needed near-constant reassurance and supervision. Then, shortly after I had gotten her up from her afternoon nap, she evidently had another TIA, and for a while only spoke gibberish – complete word salad. Needless to say, this was frightening for her, and she was almost combative in response. After an hour or so she rallied, but it was still a difficult evening until we got her to bed.

* * * * * * * * * * * * *

We are made of star stuff.

– Carl Sagan, Cosmos.

Ever since Sir Arthur Eddington sorted out the hydrogen fusion theory of star fuel, which led to the understanding of how the elements are created, there has been a growing awareness that we are, quite literally, the stuff of stars. All of the atoms in our bodies were likely forged in the fusion furnaces of stars now long gone.

And those atoms are shared around. Recycled. I remember seeing somewhere a fun calculation that all of us – each and every person alive – carries with them something like 200 atoms which were in the body of Jesus (or, say Nero, Hitler, et cetera…). Whether a person is eaten by a predator, or their body allowed to decompose in the ground, or burned on a pyre, their atoms just go back into circulation and eventually make their way into all of us.

And one day our own sun will change from a hydrogen-fusing star to a helium-fusing star, if only for a little while. It will likely swell up into being a red giant, and when it does it will consume Earth, or atomize it and blast it into space.

So yes, my friend, in a very literal way, my MIL is exactly like a star that’s going into its final flameout. And I find that oddly comforting. And beautiful.

Jim Downey

(Cross posted to UTI.)

Architecture as shorthand.

What do you visualize when I say “Hobbit”?

How about “Blade Runner”?

Chances are, in both cases you had a mix of images you thought of. But I would wager that you had at least one architectural image both times: of a ‘Hobbit Hole’ and of the Tyrell Corporation’s vast pyramid. In both cases the iconic images help to anchor us in an alternate reality, whether it is Tolkien’s Middle Earth or Ridley Scott’s dystopian LA of 2019. (I’m sorry to say I don’t remember how much description of architecture Philip K. Dick had in his novel from whence Blade Runner is drawn – mea culpa.)

Odd or (paleo-) futuristic architecture has been a common device to help create a sense of setting for SF and fantasy just about forever. Descriptions in text, or images used in movies, quickly communicate that the setting is something different than our everyday world. And even before you get into a book or movie this works. With a movie poster or a book cover the visual image of architecture can instantly convey something about content to the viewer, and when it is well done it both informs and intrigues, and can come to symbolize or summarize the entire story the director or author wishes to tell.

I use architecture this way in Communion of Dreams. There are descriptions of how the US Settlement Authority offices reflect the passive defenses of the chaos following the fire-flu, of how they also incorporate some elements of the new building technologies from space colonization. There are descriptions of the colonies themselves, and of the space stations (both old and new), not to mention Darnell Sidwell’s Buckminster Fuller style dome habitat. There are even descriptions of how homes have evolved somewhat, adapting to a more communal style and drawing on the resources of huge numbers of abandoned buildings.

But the book opens with a small research facility in the ‘buffalo commons‘ out on the Great Plains prairie. I don’t give a lot of description of the station in the book (perhaps that’s something I should change . . . hmm), but envision it as a small, modular unit which could be relocated easily if necessary. Perhaps something like this. Or this. Or even this.

Those are all from a Wired column by Rob Beschizza titled “Small and Fabulous: Modular Living as it Should Be.” (Via BoingBoing.) I can’t say that I would really want to live in any of the dozen designs profiled in the article – but I am a spoiled American in an 1883 Victorian home with about a dozen rooms. Realistically, most of the world lives in much smaller spaces. And when you start considering the cost of transporting materials and managing environmental controls in space, then some fairly radical changes will be necessary.

Architecture, like any art, is a reflection of the society which produces it. Of course, until an architectural style is widely adopted it cannot be said that it is representative of society. As interesting as the various modular homes in the Wired article are, I cannot imagine that they will become emblematic of our society anytime soon. But because of that, they’d be perfect for use in, say, a film adaptation of Communion of Dreams. I wonder what Peter Jackson will be up to once he is done overseeing the production of The Hobbit in 2011 . . .

Jim Downey

Defining your victory conditions.

My shooting buddy S called me up yesterday morning, wanted to know if I felt like getting out to do a little plinking. Since we had a warm front move through the night before, it was forecast to be in the upper 50s – not your typical January weather for Missouri. A chance to get out and do some shooting was most welcome.

He said that his Brother-In-Law was in town. I knew that S and T (the BIL) had hunted together for years, and that S trusted T not to be an idiot with a weapon, but I didn’t know much about him beyond that. S wanted to know whether it was OK for T to come along, try out some of our pistols. “Sure!”

So we set it up and went out to the range. As is my preference, informal shooting on private land – just tin cans at about a dozen yards for pistols, somewhat further for a little 9mm carbine of mine. Relaxed, laid-back, but still sufficient to keep my skills sharp and my mind off of being a full-time care provider for a few precious hours.

Since I didn’t know T, I wasn’t sure of his proficiency with handguns. And as we were talking about the guns we brought, getting them out and getting them ready, it was clear that he hadn’t ever shot a number of them. This isn’t too surprising, since several of them are somewhat uncommon.

My buddy S and I went first – our guns, make sure everything is working OK. When it was T’s turn, with a casual concentration he outshot us both, with our own guns. Turns out he has a law enforcement background, and still is involved in firearms training. As I noted to a friend in an email last night:

Nice to be shooting with someone that good, who wasn’t trying to be a dick about it. I’m a pretty decent shot, and can be quite good if I push myself into a ‘competition’ mindset. But I would really rather just relax and shoot without having something to prove. S is the same way. But trust me when I say that is somewhat rare – too often the competition bug gets in the way.

T was a state level competitor, but that was some years back. So now he’s relaxed – and good. Probably no where near where he was when he was competing, but that’s OK. Shooting cans at 15 yards was perfectly fine.

* * * * * * * * * * * * *

OK, I’m going to brag a bit. Though it is all true.

When I was heavily involved in the SCA I was *heavily* involved. For a period of maybe about ten years I was known throughout the world-wide organization, in no small amount because of my ability as a fighter in the SCA style of martial arts. I had achieved the highest awards and rankings, acted as the chief officer in charge of all the fighting rules and safety criteria, and had literally written the definitive instruction manual for one particular sub-set of the martial art (greatsword use, if you want to know). I was, simply, one of the best there was. Given that there were tens of thousands of people engaged in this martial art around the world at the time, this was no small accomplishment, though of course in the ‘real’ world it doesn’t amount to anything of note.

But one thing which you might find a bit curious: in an organization where the basic measurement of skill is winning within the context of a tournament (patterned somewhat loosely on chivalric tourneys of the Middle Ages), I only won exactly four tournaments in my entire SCA career. Two of those were ‘Crown Tourney’, in which the ‘ruler’ for a six month period is chosen, and two others were other somewhat prestigious tournaments. But that’s it.

* * * * * * * * * * * * *

Eric Zorn of the Chicago Tribune posted a piece last week titled “50 things I’ve learned in 50 years, a partial list in no particular order.” It’s kind of fun, and while I disagree on a few points, as I approach my own 50th birthday later this year I find it’s a list I pretty much could have come up with myself. In particular, he notes this:

38. In crisis or conflict, always think and act strategically. Take time to figure out what the “winning” outcome is for you, then work toward it.

I learned this long ago as applied to all of life, phrased simply as “define your victory conditions”. It has meant a somewhat less conventional life for me, mostly free of the trappings of “success.” And I’m OK with that.

* * * * * * * * * * * * *

My friend responded to my email about shooting yesterday with this:

Nice to be shooting with someone that good, who wasn’t trying to be a dick about it. I’m a pretty decent shot, and can be quite good if I push myself into a ‘competition’ mindset. But I would really rather just relax and shoot without having something to prove. S is the same way. But trust me when I say that is somewhat rare – too often the competition bug gets in the way.

You are men.

Men have testosterone.

It’s very simple math.

My reply:

Over-simplified, actually. It’s more of a mindset.


I won four tournaments in my entire SCA career. Crown twice, Valour, and a memorial tourney in Des Moines. That’s it. Yet I had a world-wide reputation, and it was justified. By almost any measure you could devise, I would have been considered an ‘alpha male’ in terms of the prevailing testosterone pop-psych.

Why? For the same reason that I didn’t want to get all competitive with T and S when shooting yesterday: winning things like that just isn’t that important to me. Some guys with *plenty* of testosterone are perfectly happy to define their lives in ways different from the prevailing pop-psych.

My friend’s insightful response:

Although I have noticed that at some level of competence, whatever the subject, people don’t seem to have quite the need to compete that they would otherwise. I’ve run into it myself in some areas. I think that with T and S and you, all of you knew that you’re competent shots and the idea was not to plink off the most cans, but to have fun trying weapons. And that’s what you did. I guess a better way to say it is that when people are comfortable enough in their own skin, their own level of ability in whatever they are doing, they don’t need to compete and can just enjoy participating in the activity.

Is that what you mean?


* * * * * * * * * * * * *

After shooting, we got back to my place, and hung out a while back in my bindery (where I have a large working table where we could set out some guns and whatnot to look at and talk about.) In the course of the conversation, S mentioned to T that I had written Communion of Dreams, and that it was up on the web for anyone to download.

“Doesn’t that make it kinda tough to make any money off of it?” asked T.

“That’s not the point,” I answered.

Because, while I wouldn’t mind selling the book to a publisher, and think that eventually having the book online will help in doing so, that’s not what my ‘victory condition’ is. My victory condition is to have people read the book, find it an engaging and thought-provoking story. Sure, lots of money from having a best-seller would be nice, but in all honesty I can earn a decent income from my book conservation work. My real goal is to be respected as a writer. And if I have to do that in an unconventional way, well, that’s a path I’m used to walking.

Jim Downey

“She’s a strong woman.”
January 3, 2008, 1:04 pm
Filed under: Alzheimer's, Health, Hospice, Predictions, Sleep

“She’s a strong woman,” said Lisa, our regular hospice nurse. We were standing out in front of the house, talking the way people do at such times, in spite of the 11 degree temperature and bit of cold wind. Neither my wife nor I had coats on. But it didn’t matter at that moment.

* * * * * * * * * * * * *

I came downstairs this morning, noted that there wasn’t a time marked on the blackboard in the kitchen. I went into the front room, where the health aide who stays here overnight three nights a week was waiting. I glanced at the monitor, heard my MIL snoring lightly.

The aide, Ruth, glanced at it as well, and then back at me. “She never called to get up to use the toilet.”

“Not at all?”

“Nope. She’s turned over or shifted around a couple of times, but never seemed to wake up at all.”


“She done that before?”

“Not in recent history.”

* * * * * * * * * * * * *

We made it through the holidays. I kept thinking that I would write about how my MIL was doing, but everything seemed so unsettled, I wasn’t quite sure what to say. First Christmas, with my wife’s brother and his family over for a big meal and to exchange presents. That went fine, and my MIL seemed to enjoy herself, enjoy the company. But after her nap she had forgotten entirely that anyone had been to visit.

Then she had good days and bad days. Days when she mostly slept, days when she seemed to be tracking things around her pretty well, days when even simple words escaped her understanding. Fever would spike for a day, then back to normal for two. There were no trends that were easily identifiable.

New Years eve we mostly ignored. My MIL wasn’t aware of the date, and my wife and I weren’t up for doing anything. With the home health aide coming to stay overnight that night, we just did the usual routine, went to bed as normal – and I was asleep by 10:30. A friend teased me about it by email the next day, said I was getting old. I was grumpy, somewhat resentful in my reply. I’m often grumpy these days, due to the stress. I’m glad most of my friends understand.

* * * * * * * * * * * * *

Lisa came into the bedroom, set down her things, handed over the package of Depends for my MIL. Hospice covers everything, even that. My wife helped her mom sit up on the edge of the bed as I opened the drapes for the large double window.

Lisa pulled the wheelchair over to the side of the bed, settled herself, and began going through her usual exam, chatting pleasantly with my MIL all the while assessing her condition, asking us questions about how she had been doing the past week. As usual, she found it difficult to get a solid pulse when taking my MIL’s blood pressure, then her brows knit together for a brief moment. “78. Only number I can get.”

She looked from MIL to me and my wife. “Has she been sleeping long?”

“No, she just laid down after breakfast and getting dressed about five minutes before you got here.

Lisa nodded, continued the exam. But she was being a little more thorough than usual, checked my MIL’s fingernails closely, then her toenails. Listened carefully to her lungs, timed her heartbeat for a long time, tested the elasticity of the skin on the back of her hand. Asked about how much my MIL was drinking, kidney and bowel function. All the while smiling and interacting with my MIL, keeping her happy and engaged.

“How much is she sleeping each day now?”

My wife and I looked at each other, calculated a moment. “About 16 hours a day, give or take an hour or so.”

Lisa nodded. She looked at my MIL, asked “Are you feeling OK?”

My MIL continued her smile. “Well, I think so.”

“Any questions?”

She looked to me and my wife for some assurance. “No, no, I don’t think so.”

“Good, good,” said Lisa, packing her things.

“MIL, do you want to lie down again for a while?” I asked.

“Yes, I think that would be nice.”

My wife got her tucked back in bed safely as I escorted Lisa out.

* * * * * * * * * * * * *

Part of my difficulty in writing about my MIL these past days has been confusion about not just what to say, but about how I felt about it.

I’m tired. So very, very tired. As I’ve mentioned, this time of year usually carries something of a depressive element for me anyway. With the lingering uncertainty about where we were at with my MIL’s condition, I’ve felt a certain confusion about what I want, what to do. It is easy to understand how a care-provider will become exhausted by the process of doing what we’ve done for the past four or five years. It is even easy to understand how they might look to the end with a certain anticipation – not wishing for their loved one to be gone, but knowing that with the end will come release from the burdens of care giving.

What may not be easy to understand is how the prospect of that is a little frightening. No, I’m not talking about the mechanics of death – that is fairly easy to understand when you are a mature adult with the experience of losing friends and family. Rather, it is fear which comes from a change of definition of who and what you are.

And it is fear of guilt, at least in my case. Guilt over whether I could have done more, guilt over wanting to be free of the burden of care-giving.

* * * * * * * * * * * * *

“Are you finished with lunch?” I asked my MIL, as I came into the kitchen. I had been in my office, writing this entry.

“Yes. But I need someone to unblock the wheels.”

We have to keep her chair secured with a 2×2, otherwise she’ll try and leave the table. I set down her after-lunch meds on the table after I removed the plate for her lunch. “Oh, I can take care of that. Here, you need to take your pills.”

“Oh, OK.” She took her pills.

“Ready for a lie-down?”

“Yes, I am.”

I got her away from the table, removed her bib, and wheeled her into her bedroom. She used the toilet in there, then I helped her into bed. As I was tucking her in, she looked up me and said, “thank you for that delicious lunch!”

“You’re welcome. Have a good nap and call when you are ready to get up.”

And as I walked out, closing the door softly behind me, my eyes filled with tears.

* * * * * * * * * * * * *

I escorted Lisa out, after the examination. “I take it you see something?”

We walked down the front steps. “She’s declined. There’s congestion in the lower lobes of her lungs, and they sound rough all throughout. The low blood pressure and high pulse rate – it was over 110 – is not a good sign.”

“How was her heartbeat? Same irregularities as before?” I asked, as my wife came out to join us.

Lisa looked at my wife. “Yes, but hard to tell, her heart is beating so fast it kind of covers it up.”

“What do you think?”

“She’s close. The end could come at any time. Hopefully in her sleep.” Lisa said it in a way that was plain, honest, but sympathetic.

I nodded, looked back up at the house, the flags waving on either side of the front porch. “We were surprised she made it to new year, frankly.”

“She’s a strong woman.”

I nodded, looked at my wife. “She is, indeed.”

* * * * * * * * * * * * *

Jim Downey

(Cross posted to Daily Kos.)