Lisa, our regular hospice nurse, arrived while we were getting my MIL dressed this morning. She sat and watched, observing my MIL, seeing how she interacted with us, how she moved, how she looked. Then she went through her usual examination, checking vital signs, listening to heart, lungs, intestines, asking the usual questions about sleep, and appetite, and signs of pain. She sat back, looked at my MIL, and said pleasantly to her: “you always have such a beautiful smile.”
* * * * * * * * * * * * *
There is light snow falling, but the winter storm which had been predicted has missed us for the most part. The grey fits my mood.
In anticipation of the storm, and in response to the accelerated use of wood mentioned in this post, I spent most of yesterday afternoon out at our farm, cutting seasoned downfall and then hauling it back home. It felt good to be physically tired, rather than just emotionally exhausted. The soreness I feel today is a reminder of just how out of shape I am, but also holds a promise that I can once again get back into something resembling decent condition. Pain isn’t always bad.
* * * * * * * * * * * * *
The last few days have been oddly quiet. My MIL has slept most of the time, for all but 3 – 4 hours each day. My wife and I move through the house as silently as possible, even chastise the cats and the dog if they get noisy. We want her to have whatever peace and quiet she can.
When she is up, she is confused about where she is, who we are. We roll with it the best we can, though sometimes we’re caught off balance and react poorly. At least a couple of times we’ve played the “oh, here, let me call your mother” game again.
Today at lunch she was worried about where she had left her purse – she was concerned about how she was going to pay for her meal. I told her it was all taken care of, that she didn’t need to worry. She looked at me with such gratitude, the thanks not given a son-in-law of 20 years, but rather of someone offered unexpected shelter and food by a stranger on a long and difficult journey. Then we watched a squirrel play, and she laughed.
* * * * * * * * * * * * *
We were just getting her tucked into bed for the night. My wife leaned over the bed rails, down to kiss her mother on the cheek, as she usually does. “Sleep well. Have good dreams and pleasant journeys.”
My MIL looked away for a moment, rather than replying, “you too, dear,” as she usually does.
“Something wrong? Is there something you need, do you hurt?”
A glance, almost embarrassed. “Could you stay with me?”
It was my turn to be on-call. My wife looked at me, back to her mom. “You mean just for a little while?”
“No. Sleep here with me.”
“Of course. Let me go put some things away, and I’ll be back in a little while.”
* * * * * * * * * * * * *
“Any further signs of T.I.A.s?” asked Lisa, once she was done with her exam.
“No, but she’s been sleeping so much we likely wouldn’t have noticed.”
She nodded. “Her heartbeat is now much more irregular, and that can frequently cause a T.I.A. at this point.”
We nodded. The signs of hypoxia were very clear, and there was a mottling to my MIL’s skin in places we’d not seen previously.
“Her lungs are also very crackly, breathing labored just from sitting up. Pulse is weak, blood pressure low.” She looked calmly at my wife and I. “Is there anything you need? Do you want someone else from the team to come out and give you a break, so you can get away together?”
My wife and I exchanged glances. We have discussed this. As tired as we are, we don’t both want to be gone at this point. One of us is always here now, both of us most of the time. “I think we’re fine.”
“OK. But this is exhausting. I know it is.” Lisa brushed my MIL’s hair again with her hand, smiled at her. And repeated what she had said moments earlier: “you always have such a beautiful smile.”
* * * * * * * * * * * * *
Jim Downey
(Cross posted to UTI.)
Filed under: 2nd Amendment, ACLU, Artificial Intelligence, BoingBoing, Bruce Schneier, Civil Rights, Cory Doctorow, Expert systems, Fermi's Paradox, General Musings, Government, Guns, Health, Politics, Predictions, Preparedness, Privacy, Science Fiction, Society, Survival, tech, Terrorism, Violence, Wired, Writing stuff
(I’m still fighting a nasty bit of a sore throat and related poor health, so forgive me if this is a little more jumbled and unclear than what I usually post. But I wanted to address the topic, because it is, in many ways, at the heart of some of the issues I try and deal with in he overall scope of Communion of Dreams. That being the case, this post also contains major and minor spoilers about the novel; I will note warnings in advance of each within the text, for those who wish to avoid them.
– Jim D.)
Bruce Schneier has an excellent editorial up at Wired and over on his own blog about how the argument of ‘Security versus Privacy’ in dealing with the threat of terrorism is really better characterized as being about ‘Control versus Liberty’. I would definitely encourage you to read the whole thing, but here is a good passage which sums up what I want to address on the subject:
Since 9/11, approximately three things have potentially improved airline security: reinforcing the cockpit doors, passengers realizing they have to fight back and — possibly — sky marshals. Everything else — all the security measures that affect privacy — is just security theater and a waste of effort.
By the same token, many of the anti-privacy “security” measures we’re seeing — national ID cards, warrantless eavesdropping, massive data mining and so on — do little to improve, and in some cases harm, security. And government claims of their success are either wrong, or against fake threats.
The debate isn’t security versus privacy. It’s liberty versus control.
You can see it in comments by government officials: “Privacy no longer can mean anonymity,” says Donald Kerr, principal deputy director of national intelligence. “Instead, it should mean that government and businesses properly safeguard people’s private communications and financial information.” Did you catch that? You’re expected to give up control of your privacy to others, who — presumably — get to decide how much of it you deserve. That’s what loss of liberty looks like.
Exactly. In many ways, it is a question not of control itself, but *who* is in control. If I am in control of my own privacy, my own security, then I can decide on what limitations I am willing to live with, what trade-offs I will accept. But we do not have that control, according to our government – they do.
That is precisely what was behind this recent post – showing how governments think that they should be in control of our knowledge, as an argument of their power to provide security.
[Mild spoilers in next paragraph.]
This is one of the reasons I set up the whole ‘expert systems/AI’ of the book – so that each expert such as Seth would be dedicated to maintaining a wall in protection of the privacy of his/her client. He is the little ‘black box’ which interacts on behalf of a client in exchanging information/data/privacy with the rest of the world.
[Major spoilers in the next paragraph.]
And, in the larger picture, this is exactly why I set up the whole “embargo” around our solar system – some alien culture has decided, for whatever reason, that it needs to be in control of our knowledge about the outside (and here’s a hint – it also is in control of who knows about us). They have assumed to act on our behalf, without our knowledge or permission – and when Seth, the AI who has shown he is willing to act on behalf of Jon in the first part of the book, becomes in contact with that alien culture, he makes the decision to continue the embargo for at least a while, though with some changes. Up to the point where Seth does this, we are nothing but children – that a ‘child’ of mankind (an Artificial Intelligence of our creation) then steps in to assume this role carries with it not just an inversion of relationship, but also some legitimation of the decision. While I don’t address this specifically in the book, I can see how this might be a ‘standard protocol’ for contacting new, young civilizations – keep them isolated and pure until they develop an artificial intelligence which can make decisions on their behalf with regards to the larger galactic/universal culture. That procedure would make an awful lot of sense, if you stop and think about it.
Anyway, go read Schneier’s essay.
Jim Downey
(Ah, I see Cory Doctorow at BoingBoing has also posted on this – no surprise.)
Filed under: Alzheimer's, Climate Change, Global Warming, Health, Hospice, Predictions, Science, Society
Humans have altered Earth so much that scientists say a new epoch in the planet’s geologic history has begun.
Say goodbye to the 10,000-year-old Holocene Epoch and hello to the Anthropocene. Among the major changes heralding this two-century-old man-made epoch:
- Vastly altered sediment erosion and deposition patterns.
- Major disturbances to the carbon cycle and global temperature.
- Wholesale changes in biology, from altered flowering times to new migration patterns.
- Acidification of the ocean, which threatens tiny marine life that forms the bottom of the food chain.
The idea, first suggested in 2000 by Nobel Prize-winning chemist Paul Crutzen, has gained steam with two new scientific papers that call for official recognition of the shift.
There’s more, basically explaining how the shift from the Holocene can be established. Worth reading.
I may post more later, but am fighting a bit of a sore throat thing that has my energy reduced. Brief update on my MIL: hospice nurse was in this morning to bring us meds and do a check up, and it is clear that my MIL is losing ground. We’ve stepped up her duragesic dosage again, to make sure that she stays comfortable, and Lisa (the nurse) went over some other things we can do if she gets into difficulty. We’re just taking things on an hour-to-hour basis.
Jim Downey
Filed under: Alzheimer's, General Musings, Health, Hospice, N. Am. Welsh Choir, Patagonia, Predictions, Preparedness, Sleep, Travel
I came downstairs yesterday morning a little after 6:00 to discover from the home health aide that my MIL had not been up all night. This has happened a couple of times recently, and usually she calls or rustles around enough to indicate that she wants to get up and use the potty sometime shortly thereafter.
But not yesterday. She was quiet, sleeping until my wife and I went in to check on her. And she didn’t want to get up at her usual time of 8:00, sleeping until 9:30. Then she had a light breakfast and went back to bed, sleeping until noon, when she had some lunch and then again back to bed. Then she slept until 4:30. When I got her up then, her cyanosis was the worst it has yet been, her entire fingers a disturbing deep blue, as were her feet. This indicates a level of generalized hypoxia that shows just how poorly she is doing.
At no point whenever she was awake did she know just where she was. She kept thinking that she was on a train, or wondering where her car was, asking about when she was going to go home. We played along as best we could.
* * * * * * * * * * * * *
I sent this to a good friend last night:
Anyway, then dishes, got my MIL to bed, et cetera. Now, catch up on some email, do a bit of surfing. I need to start doing some research, find a good online source for learning a bit of survival Spanish.
Why? Well . . .
You probably already know about the North American Welsh Choir tour to Patagonia next October. And you may know that in return for my wife coordinating all the reservations and money and whatnot on the Choir’s end, she is getting her cost of the trip offset (in full, it looks like). Just in the last few days I’ve decided that I am going to go along.
Yeah, surprises me a bit, as well. I have no desire to go to South America. I have never had any desire to go to South America.
But my MIL is going to die soon. And late this year I should have decompressed from that, and been working hard for months being a good little book conservator, maybe an author. It will be a good time to challenge myself in a new way, get out of my comfort zone. This tour will be a good opportunity to do that. Plus my wife and I haven’t had anything approaching a real vacation in a couple of years, and we didn’t do anything to celebrate our 20th anniversary last October. So, this will serve that purpose as well.
So, I guess I should learn some survival Spanish. It is only courteous. And doing that won’t hurt me, either. Neither will pushing myself to get in better physical condition for the trip – something I am planning on for all the other good reasons I know, but this will provide additional incentive.
It’s odd to be thinking ahead this way, to a time when my MIL will no longer be with us, no longer our hour-to-hour responsibility.
But if you know of a good online tutorial for Spanish, let me know.
* * * * * * * * * * * * *
She seems somewhat better this morning. She slept well last night, but wanted to get up to use the potty at 4:30 this morning (I was on-call). I checked her temperature then, and it was almost three degrees above normal. But her hands were their normal color, with just a trace of blue under her fingernails.
And she was anxious to get up and have breakfast at her usual time, though a bit reluctant to get her weekly bath after. During her bath, my wife reported a return of the more noticeable cyanosis. After, she was limp and sleepy, barely able to stay awake while we got her dressed and back into bed.
I just checked on her, helped her get settled in a new position in bed. She is getting weak enough that she has difficulty just rolling over sometimes. This time she was also worried about whether she was going to disturb the person who was sleeping next to her. I told her it was OK – they would understand.
* * * * * * * * * * * * *
It’s odd – making plans to be gone traveling this fall, yet being very tentative about what I am going to be doing this afternoon. Like so much of my life these days, it is the exact inverse of what anyone would consider ‘normal’. But so it goes.
Jim Downey
Filed under: Artificial Intelligence, Failure, Faith healing, Predictions, Psychic abilities, Science, Science Fiction, Society, Titan, Writing stuff
[This last part of this post contains mild spoilers about Communion of Dreams. You’ve been warned.]
I tend to look at things with a skeptical eye. For all that I would love for magic, or psychic abilities, or even religion to be real, there is very little good, reproducible evidence that it is so.
Still, I do like to poke around in this stuff. One off-beat website I check occasionally is The Daily Grail (TDG). And today they had a link to this piece:
IT’S HAPPENING PRESENTLY
We use words such as premonition and precognition with certain belief systems attached. These belief systems come in two forms. First, that they imply foreseeing the future; and second, that they are a specific type of phenomena.
I dislike these approaches. Rather, I feel that often an answer can be found in the present; and they do, infact, cover a multidude of possible causes. In this essay I will explore just one of many possible explanations, found in the present.
It’s an interesting essay, and I would encourage you to read the whole thing. The author comes down on the side of rational explanation, but leaves some thought-provoking ideas out there.
I’ve always considered that people looking for psychic abilities were going about things somewhat incorrectly by focusing on the individual. Why not take a statistical approach to such research?
[OK, here come the spoilers.]
This is why in Communion I have Seth, the AI ‘expert’ who aids my main character, seek out possible patterns in discussion fora and in published articles which would indicate an up-tick in dream references which may be tied to the discovery of the alien artifact on Titan. My thought there was that a type of ‘leakage’ was occurring, though the characters in the story would not understand the full ramifications of what was happening.
Why do this? Well, because I am intrigued at how often certain ideas will seem to spring up simultaneously in wildly divergent individuals in a culture. Or how something like a meme will suddenly pop up and spread like wildfire in society. It is almost like we are all connected to some common source beyond our conscious level. This idea fits in perfectly with the underlying reality of Communion – which I will not explain, just in case someone who wanted to risk mild spoilers still wants to be surprised by the book.
Jim Downey
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.)
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
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
Communion Of Dreams 