A few days ago I wrote about the difficulty of accomplishing anything as my mother-in-law slowly slips away due to Alzheimer’s, and the impact that has on myself and my wife.
Well, it’s taken a significant turn for the worse. For whatever reason, her condition has worsened substantially in the last few days, to the point where she now frequently asks to “go home”, doesn’t recognize me or my wife for who we are most of the time, and has long and elaborate “memories” of things which she thinks she has just done (going to see a movie, taken a trip with friends) earlier in the day. Her tenuous grip on reality has slipped to almost nothing.
I wind up spending long periods of time just talking with her, reassuring her that she’s here at home, safe and we’re taking care of her – we’ve long since given up trying to ‘correct’ her information or view of the world. This is very intense and demanding, and when coupled with increasing unpredictability in her sleep habits, means that I am increasingly low on sleep and energy and focus and initiative.
Still, I have a creative drive that wants outlet. Very frustrating.
Jim Downey
We’ve recently had to make a change in strategy for dealing with my mother-in-law’s confusion (related to her Alzheimer’s). Heretofore we’ve tried to keep her “grounded” in reality, through a series of questions about recognizing family member’s pictures, asking if she knew where she was, and so forth. Generally, after a couple of minutes of this, she’d be pretty well settled about where we were, who was who, and so forth. It helped to keep her anchored in the real world.
But then last week I noticed that she was starting to become more anxious as a result of these questions. When she couldn’t come up with a name, or wasn’t sure whether we were in her parents home or someplace else, it just made her embarassed and worried. She’d resort to trying to construct a reality that made sense of her mixed memories, and get hostile if you tried to challenge that reality.
The last thing we want is to have her upset. Not only does this make things more stressful and difficult in caring for her, but it sort of defeats the whole purpose of our caring for her here at home (her home of 53 years). Clearly, we had to change our strategy.
Now we don’t try and ‘lead’ her to any particular view of the world, and rather concentrate on letting her know that she is loved and safe where she is (wherever she thinks that is). We’ll answer her questions honestly, if she wants to know who is who in a photo, but we don’t press her to come up with answers herself, or try and correct her if she volunteers an opinion. I mean, if she’s wrong, so what? Nothing really hinges on whether she gets someone’s name right, or if she thinks that we’re in some other place.
But this is surprisingly difficult, if you don’t make a conscious effort to allow her to be in her own little world. The tendency we all have is to try and coordinate on what reality is – to have a shared view of what the world is like. When confronted with someone who disagrees on something as fundamental as your location, it is easy to get your back up. You’ve probably experienced this with a friend or spouse when traveling, both of you looking at a map and drawing different conclusions about where you are – such disagreements become heated very easily, and can take on an importance beyond just a simple determination of location.
And I think that this is at the root of many of the disagreements which exist between believers and non-believers. In some very basic way I see the world differently than someone who is a believer. I look at the evidence around us, and say “there is no indication that there is anything other than natural process at work”. Someone else looks at the same material and sees plenty of evidence of design. I think that he’s wrong, and being somewhat stubborn in consideration of the evidence. And he most likely feels exactly the same way about me.
Now, the difference between this situation and the one with my MIL is that if she is off in her own little fanasy land, it makes little or no matter. Whereas the kind of world-view that exists on the part of believers vs. atheists can matter a lot, in any number of ways here in the real world. How to proceed in regards to, say, the environment, depends on whether or not you expect the world to be around for a while or if the Second Coming is just around the corner. I address this issue at some length in Communion, because it deals with a changing paradigm forced by the discovery of an alien artifact. But I am still always surprised when it plays out so clearly in discussions I have over at UTI and elsewhere. Which reality you subscribe to really does make all the difference in the world.
Jim Downey
Filed under: General Musings, Harry Potter, J. K. Rowling, Predictions, Press, Publishing, Religion, Society, Writing stuff
[SPOILER ALERT – this post contains information about the final book in the Harry Potter series which some may consider spoilers. You’ve been warned.]
A good friend sends me links to book reviews. She knows that I don’t generally read book reviews, but every so often will see one that she thinks might tempt me, and passes it along. Every once in a while I’ll actually be interested enough to read one of the reviews she sends.
That was the case when I saw a link to a piece by TIME Magazine’s book reviewer, Lev Grossman, a couple of weeks ago which was titled “Who Dies in Harry Potter? God.” Given that this piece was published about 9 days before the last Harry Potter book was to be released, I thought it curious that the writer was making such a claim. So I read it.
It is an odd piece. I say that having read it four or five times. Here’s the relevant bit:
Rowling’s work is so familiar that we’ve forgotten how radical it really is. Look at her literary forebears. In The Lord of the Rings, J.R.R. Tolkien fused his ardent Catholicism with a deep, nostalgic love for the unspoiled English landscape. C.S. Lewis was a devout Anglican whose Chronicles of Narnia forms an extended argument for Christian faith. Now look at Rowling’s books. What’s missing? If you want to know who dies in Harry Potter, the answer is easy: God.
And he ends his piece with this prediction:
When the end comes, where will it leave Harry? He’ll face tougher choices than his fantasy ancestors did. Frodo was last seen skipping town with the elves. Lewis sent the Pevensie kids to the paradise of Aslan’s Land. It’s unlikely that such a comfortable retirement awaits Harry in the Deathly Hallows.
OK, Grossman sure got *that* wrong. But in his actual review of the book, published July 21, he once again makes the assertion that JK Rowling has eliminated God, in this passage:
Her insistence on this point is a reflection of the cosmology of the Potterverse: there are no higher powers in residence there. The attic and the basement are empty. There may be an afterlife, and ghosts, but there is certainly no God, and no devil. There are also no immortal, all-wise elves, as in Tolkien, nor are there any mysticalMaiar, which is what Gandalf was (what, you thought he was human? Genealogically speaking, he’s closer to a balrog than he is to a man.) There is certainly no benevolent, paternal Aslan to turn up late in the book and fight the Big Bad. The essential problem in Rowling’s books is how to love in the face of death, and her characters must arrive at the solution all on their own, hand-to-hand, at street level, with bleeding knuckles and gritted teeth, and then sweep up the rubble afterwards.
I haven’t read either of the two novels that Grossman has written. And, as noted, I don’t read book reviews except very rarely and don’t believe I’ve ever read one of his. So I can’t say what his thoughts are on God and whether he intends this as a slam or not. But I have to say that I am not in the least bit bothered by the fact thatJK Rowling doesn’t turn to a super magic man to resolve things, and instead forces her characters to come up with their own solutions – to grow, struggle, and learn and then to live with the consequences of their choices. This is exactly the reason I have said all along that these books are not ‘children’s books’ in the usual sense.
Perhaps it is a commentary on how our society has changed since the time of Tolkien and Lewis that these books are different in this fundamental way, and are yet so phenomenally popular. But I don’t see it. Religion has a stronger hold on our culture here in America than it did some 50 years ago, and there have been concerted efforts by the far fringe faithful to ban the Harry Potter books from schools and libraries on the basis of them promoting witchcraft. No, I don’t think that Rowling has tapped into some kind of anti-religious Zeitgeist. Rather, she has told her tale with amazing skill, and has left plenty of room for belief or non-belief in the background, where it belongs. While many people of faith use that belief as a crutch, that is not a fundamental aspect of religion, nor is it an excuse for not growing up and dealing with the world in mature terms. We, all of us, people of faith and no faith, have to be responsible for the here and now, have to make difficult choices and live with the consequences. That is the pre-eminent message of the entire Harry Potter series, and I was very glad to see that Rowling did not shy away from maintaining that message to the very end.
Jim Downey
(Cross posted to UTI.)
Filed under: Alzheimer's, Apollo program, Burt Rutan, General Musings, Heinlein Centennial, NASA, Predictions, Society, Space
This morning, when I went to check on her after hearing some stirring, my mother-in-law looked at me and asked if I knew where her toothbrush was.
“Yes. I know where it is. When you get up, we’ll be sure to use it.”
This simple reassurance allowed her to get back to sleep, and when we got her up at her usual time about 45 minutes later, she had completely forgotten the whole thing. See, she is well into the arc of Alzheimer’s, and has slipped to the point where she doesn’t really know where she is or who is around her most of the time. But little things like knowing that she has her own toothbrush, and she can use it, seem to make her happy, give her a measure of security. I don’t try to understand it. I am too exhausted for that. I just try to roll with it.
***********************
Last night a friend sent me the first news reports of the explosion at Scaled Composites, indicating that two people had died and others were injured, evidently during a test of one of their rocket engines. After reading the brief news item, I replied:
Well, shit.
But as everyone involved said during the Centennial – this is going to happen. And while we have to work to take precautions, we can’t allow it to stop the future.
My friend responded to this with:
Yes. If people say we should stop, I have just two words for them:
Apollo One.
My parents knew the astronauts. And if we’d let that fire stop the space program, well……..
***********************
I met Brian Binnie at the Heinlein Centennial. If you don’t recognize the name, that’s OK. Brian was the pilot of SpaceShipOne for the two flights which won the Ansari X Prize. He works for Burt Rutan of Scaled Composites. During his inspiring presentations and discussions at the Centennial, he conveyed a simple, honest love for what he did. He made no pretense that he was a brilliant engineer or scientist (though he holds a couple of advanced degrees), and poked fun at his own public speaking skills. He came across as a regular guy, highly skilled in flying test vehicles, and more than a little amazed to have been involved in making history. I like regular guys, people who are smart and extraordinary but don’t take that too seriously.
I hope Brian wasn’t one of the people hurt in the explosion. But even if he was, I bet that his attitude won’t change, and he’ll still be convinced that private spaceflight is worth the risk. On one of his test flights ofSpaceShipOne , the ship was badly damaged and he could have easily been killed. Obviously, that didn’t stop him then. I’m sure Brian, and all the others at Scaled Composites, will be going over the data from the test to see what happened, and how to avoid it in the future.
7/28/07 Update: Scaled Composites named those killed in the blast: Eric Dean Blackwell, 38, of Randsburg; Charles Glenn May, 45, of Mojave; and Todd Ivens, 33, of Tehachapi. No word on the injured.
***********************
Panel Finds Astronauts Flew While Intoxicated
Jul 26, 2007
By Frank Morring, Jr./Aviation Week & Space Technology A panel reviewing astronaut health issues in the wake of the Lisa Nowak arrest has found that on at least two occasions astronauts were allowed to fly after flight surgeons and other astronauts warned they were so intoxicated that they posed a flight-safety risk.The panel, also reported “heavy use of alcohol” by astronauts before launch, within the standard 12-hour “bottle to throttle” rule applied to NASA flight crew members.
You know, if you were going to strap me as cargo to the top of a chemical rocket with a 1-in-50 chance of catastrophic failure, I might well be still a little drunk, too. Oh, not if I was going to be responsible for flying the damned thing. But if I was just along for the ride? Yeah, I can see getting drunk before hand.
But that’s no way to run a space program.
***********************
One day last week a steam pipe ruptured in New York City, killing one person and injuring many others. Each day in the US over 100 people are killed in vehicle accidents, and about half that number are murdered.
I was orphaned in early adolescence, one parent murdered and then the other dieing about 18 months later in a car accident. I came to understand death much earlier than most people in our country do. I’ve had a few close calls myself, all of them stupid and unexpected things that had my luck gone just a little differently, I would have died. Now, at middle age, I’ve got the typical health risks for a man which could mean an early and unexpected death.
But I don’t worry about that. Death wins. Every time. None of us gets out of here alive. We are all going to die, sooner or later. The only real thing that matters is that we live life as completely as possible, loving, creating, building the future. Brian Binnie understands that, and I’d bet that the others at Scaled Composites do too. I like to think that my parents understood that. My mother-in-law, who may not understand this on an intellectual level, still experiences life, still worries about her place in the world, still wants to make sure that she can brush her teeth.
Jim Downey
(Cross posted to UTI.)
I remember, when I was a kid back in the 60s, that it was still fairly common for people to routinely and without much thought to just toss junk out of their cars onto the side of the road. I’m not talking about the occasional idiot with no care for the environment – I’m talking about your typical American. The roadsides, as a result, were awful. This was also still the era of private and informal ‘dumps’ all through the countryside where people would just literally fill up a small creek valley with their trash and unwanted junk. It wasn’t really until the nascent environmental movement got going that people started to think of the world a bit differently, and within a decade or so it was no longer culturally acceptable to just toss junk out of your car or dump your trash.
So, when I see this kind of news item, I am taken back to those days:
CAPE CANAVERAL, Fla. – A spacewalking astronaut tossed two large chunks of junk off the international space station Monday, hurling the old equipment into orbit.
Clayton Anderson, a sportsman who enjoys officiating basketball games back on Earth, heaved a 1,400-pound, refrigerator-size ammonia tank away from the station. His first toss was a 200-pound camera mounting.
Mission Control declared the tank throw great and “right down the middle.”
Um, guys, is this really the image we want to send? I know that the two items are expected to ‘de-orbit’ and burn up on re-entry within a year, but still . . . There are over 100,000 bits and piece of space junk in orbit already, complicating launches, threatening satellites and space-based telescopes, and even risking astronaut survival in orbit. The US Space Surveillance Network tracks like 10,000 of these items. Adding to this mess isn’t smart, and treating the disposal of junk as though it were some kind of game seems to me to be a very bad idea. It’s like we’ve stepped back 50 years, to a time when it was OK to just treat the Earth as our garbage dump. Have we learned nothing?
Jim Downey
(Cross posted to UTI.)
Just a quick post, a look-back on this day to what is undoubtably my biggest failure to date: my ill-fated effort four years ago to organize a letter-writing campaign to persuade the Nobel Prize committee to award the Nobel Prize in Literature to J. K. Rowling, for the Order of the Phoenix. As noted on my Wikipedia page, it was a complete and total debacle – even the Harry Potter fans hated the idea.
Ah well. You can see the original webpage from the effort here, archived on my afineline site, though the site nobelprizeforjo has long since lapsed. Be curious to see if anyone else will pick up on this idea, now that her series is finished. As I said at the time, “who else has done more to promote literacy worldwide?”
Jim Downey
Filed under: Alzheimer's, Ben Bova, Frederik Pohl, General Musings, Heinlein Centennial, J. Michael Straczynski, JMS, Publishing, Science Fiction, Society, Writing stuff
If I published 4 books a year, for the next 25 years, I’d have accomplished in my 74 years what Ben Bova has accomplished in his life so far.
Yeah, it reminds me of that line from the short-lived series Crusade: “Whenever I get to feeling too proud of my accomplishments, I remind myself that when Mozart was my age, he’d been dead for six years.”
Bova is a legend in Science Fiction. Justifiably so. But he’s more than that. He’s a decent human being.
I say that for two reasons, both observed up close at the Heinlein Centennial. The first is summed up nicely by the James D. Miles quote which I have long appreciated:
“You can easily judge the character of a man by how he treats those who can do nothing for him.”
During the Centennial, I was waiting for a friend at a rendezvous point before going off for some lunch. The session I had attended had wrapped up early, so I was just standing there in an entrance hall, minding my own business. From one of the adjacent corridors came a distinguished gent, walking towards me. As he got closer, I recognized him. It was Ben Bova.
He came up to me, peered down at my Centennial badge, and quietly introduced himself. There was no implication that I should be impressed or honored – he was just one guy introducing himself to another stranger who happened to be in the same place at the same time. A part of me, experienced with countless hours of public relations, took note and admired how smoothly and genuinely he did this. The other part of me tried not to stammer too much in response to his queries and comments. We chatted for a few minutes, him telling me that his flight up from Florida had been delayed, asking me why I was attending, et cetera, and then the person he had been waiting for came up (I’m embarrassed to say that I cannot recall his name . . . he was another ‘V.I.P.’ who knew Bova evidently as an old friend). Bova introduced us like I had been his old army buddy. We all chatted for a minute or two. My friend ML came up. Bova took the initiative of introducing himself and his friend to her. Then he glanced at his watch, and said to his friend, “Well, I suppose it’s time I should get in there.” With a smile to us, he asked, “Will you be joining us?”
My friend glanced at me as he turned to go. I nodded, said quietly, “Um, let’s roll with this.”
We followed a few paces to one of the empty meeting rooms. Just inside the door Bova and his friend stopped, Ben looking around somewhat confused.
“Um, perhaps you’re still on Eastern Time? There isn’t anything scheduled during the lunch break . . .” I volunteered.
“Ah, right you are,” he said, somewhat chagrined.
“You’re welcome to join us, we were just about to go get some lunch.” (Hey, lunch with Ben Bova? How cool would that be?)
“Oh, thanks, I really should go get checked in. I just got off the shuttle, and thought I was going to be late getting to this session.”
We (ML and I) slipped out, Bova said goodbye to his friend, and the three of us went one direction, Bova off towards the reception area for the hotel in the other.
Now, that was the first insight. And I concede that it could well have all been just a highly-polished act by an author long experienced with dealing with fans at Cons and whatnot. But the next bit provided the other reason for my assessment.
ML and I had our lunch, and I returned to the room where Ben Bova had thought that he was to be participating. I had planned on going to that session anyway, since the other speaker was Frederik Pohl, and the topic was “Editors in Transition,” about the early days of SF publishing.
And here’s the second thing. I haven’t a nice little quote at hand, but I can assure you that it is true: you can also tell a great deal about someone by how they treat the elderly, particularly if that elderly person is suffering some form of diminished capacity.
Frederik Pohl, to my eye, is still as sharp as a tack. But he’s pushing 90, has had some health issues, and is getting a little forgetful . . . nothing that should come as any kind of a surprise in someone that age. As the full-time care-giver of someone who has Alzheimer’s at 90, I can honestly say that there is no reason to think that he suffers from any kind of dementia or mental deterioration. He’s just evidencing the normal traits of age, and even that very mildly indeed.
The thing is, watching Ben Bova interact with Fred Pohl during the hour long free-wheeling discussion of ‘the good old days,’ I saw another side of Ben Bova that most people probably don’t. There was the usual deference and respect, but there was also a genuine warmth, what I would characterize as perhaps even a kind of love. It’s the sort of thing that allows a person to smile quietly and let slide an error or mistaken memory without the need to correct it or even bring it to the attention of the older person. It is, in my experience, a deep reverence borne of long understanding of another, and reflects that person’s own self-confidence and self-understanding. I didn’t know it until I started to do the background research for this post, but Ben Bova has long experience with the martial arts, and that was the quietude I recognized in him.
I did see more of Ben Bova in the course of the weekend – his giving autographs, accepting awards, making little presentations, interacting with friends and fans. I didn’t attempt to claim any more of his time or attention – no reason to be a nuisance. He had been very generous with me already in that regard. And besides, I’d seen enough to understand some things about him which I deeply respect.
Jim Downey
(Cross posted to UTI.)
Filed under: Alzheimer's, Babylon 5, Burt Rutan, Charlie Stross, General Musings, Global Warming, Heinlein, Heinlein Centennial, J. Michael Straczynski, Jeff Greason, JMS, Peter Diamandis, Predictions, Robert A. Heinlein, Science, Science Fiction, Singularity, Society, Space, tech, XCOR
Standing there, looking out the window to the driveway just below, I saw the fox take the unwitting squirrel. One quick, quiet leap from behind a tree, a snap, pause to snap again at the struggling grey mass, and it had breakfast. A pretty, lethal thing, yellow-red short fur, characteristic long legs and bushy tail, eyes sharp as it looked around. Probably weighed twelve to fifteen pounds, lean and long. Made me consider keeping the cats inside.
******************************
Peter Diamandis received a standing ovation for his presentation on the absolute need to go into space. It wasn’t just that the attendees at the Heinlein Centennial Gala were predisposed to his message – it was because his energy and enthusiasm swept away all doubts that this was *going* to happen, that it was economically inevitable, once we realized that it was actually possible. What’s that? Charlie Stross and others have said that while something like asteroid mining might be possible, it won’t lead to colonization? Yeah, that’s the argument. But Diamandis calculates that one 0.5 kilometer metallic asteroid will contain a *lot* of valuable metal…to the tune of 20 Trillion dollars worth. Sure, such asteroids only comprise about 8% of the known bodies anywhere near our space…but still, you’re talking tens of thousands of such asteroids of varying size. That’s a damned big incentive to build infrastructure, and once the infrastructure is in place, once the basic research has been done and there are multiple private corporations, countries, and even private citizens exploiting this resource, there are going to be some who find it advantageous to actually locate in space (semi-)permanently.
Diamandis joked that his strategy is going to be to issue a lot of ‘put options’ for the precious metals, then announce that he is going to go grab one of these asteroids and use the procedes to finance the expedition. Hey, when a man worth that kind of money makes such a joke, people should take it seriously.
******************************
I watched, one afternoon last week, while my mother-in-law suffered a slight TIA. She was sitting in her wheelchair, having just gotten up from her afternoon nap, and was finishing some yogurt. I was sitting and talking with her, when she just slowly sort of folded in on herself. While she is 90 and suffers from Alzhemer’s, she is usually capable of responding to direct questions about immediate events (how she feels, if she likes her yogurt, et cetera), but she suddenly went quiet, almost insensate. I checked to see whether something like a heart attack was in process, and asked if she was hurting or if there was some other indicator of a serious emergency. Eventually I got enough information to conclude it was likely ‘just’ a TIA or some similar event, and got her back in bed. I monitored her, and all seemed to be well. She woke two hours later, with no evidence of damage. But it was an indication of her condition, and likely a hint at things to come.
******************************
I want to have Jeff Greason’s baby.
Greason (pronounced ‘Grey-son’) is the head of XCOR Aerospace, and is one of the many companies trying to build the infrastructure of private commercial spaceflight. He and his company have accomplished a lot in the development of dependable, reusuable, and powerful rocket engines…engines sufficiently well engineered that they show no indication of wearing out after even thousands of operating cycles (being turned on and off). As he explains, the two biggest problems previously with rocket engine design was that there was wear leading to failure on both the throat of the engine (where the burning fuel exhausts) and on the nozzle (which creates the high thrust needed). The XCOR designs have engineered these problems out, and they’re still waiting to find out what other life-span problems the engine might have. And once you have dependable rocket engines, you can build a reusable and dependable vehicle around them.
But that’s not why I want to have his baby. Yes, dependable reusable rockets is a critical first-step technology for getting into space. But as Greason says, he didn’t get interested in space because of chemical rockets – he got interested in chemical rockets because they could get him into space. For him, that has always been the goal, from the first time he read Rocket Ship Galileo by Robert Heinlein when he was about 10. It is somewhat interesting to note that similar to the setting and plot of the book, XCOR Aerospace is based on the edge of a military test range, using leased government buildings…
Anyway. Greason looked at the different possible technologies which might hold promise for getting us off this rock, and held a fascinating session at the Centennial discussing those exotic technologies. Simply, he came to the same conclusion many other very intelligent people have come to: that conventional chemical rockets are the best first stage tech. Sure, many other possible options are there, once the demand is in place to make it financially viable to exploit space on a large enough scale. But before you build an ‘interstate highway’, you need to have enough traffic to warrant it. As he said several times in the course of the weekend, “you don’t build a bridge to only meet the needs of those who are swimming the river…but you don’t build a bridge where no one is swimming the river, either.”
******************************
In one of the sessions, people got to talking about what drives technological development, and one of the big things that people focused on was war. This has been a common theme in a lot of SF, including my favorite series Babylon 5 (see the Shadow War arc). I don’t entirely buy it. I tend to think that economics are a bigger force in tech development – even in wartime, most of the tech developed isn’t something like a pure weapon such as the atomic bomb; it is all the support infrastructure which has dual-use and can be adapted easily after a war because it is economically advantageous.
But this discussion took another familiar turn: that only after we have threatened ourselves with extinction through something like a nuclear war, would we find the will to go into space in a big way. That, actually, is one aspect of Communion of Dreams, but I don’t see mankind being able to survive a major nuclear exchange and then still have the capability to get into space. The infrastructure necessary to support a space-faring tech is really quite extensive, even if you have just small private companies and individuals building and using the rockets/spaceplanes to get to low-earth-orbit. Take out that infrastructure…wipe out the industrial base of the major nations, or even kick it back 50 years…and you will not have access to the kinds of composite materials, computing systems, et cetera, which are necessary components of any spacecraft. Burt Rutan will not be making SpaceShipTwo unless he has the parts – it’s that simple.
******************************
There are a few things I’ve learned in my 49 years here. One is that we age, and we will die (sure, I’d love for Heinlein’s rejuvenation technology to come into play, or some version of ‘Singularity’ to save me from personal extinction…but I’m not counting on it.) It might be through something like the advancing senescence of global warming which we should see coming but act on too late. It might be something quick and unexpected, perhaps one of Diamandis’ $20 trillion rocks taking us out before we get around to using it for other purposes.
We should be like the fox, not the squirrel. The quick-witted one. The one who takes the future and makes it his own, rather than the one who is unpleasantly surprised for a brief and painful moment.
Jim Downey
(Cross posted to UTI.)
Here’s a small insight into caring for someone with Alzheimer’s/Dementia: any change to routine will have repercussions for a day or more.
As mentioned previously, I attended the Heinlein Centennial this past weekend, while my wife was performing with the North American Welsh Choir. My wife’s sister made arrangements to come and care for my mother-in-law while we were to be gone. This is essentially what we have to do whenever we want to both be gone anywhere, and logistically it is problematic: my sister-in-law not only has her own life, but she lives on the west coast and has to fly in to be here. Given that she’s a couple hours away from an airport on her end, and we’re effectively the same here, it’s more than a little bit of a hassle.
But even beyond that, our being gone presents other difficulties. Specifically, it throws my mother-in-law ‘off’, compounding the problems presented by her disease. My sister-in-law is good about rolling with this over a short time period, but then it happens again when we get home – which tends to negate the psychological benefits of being able to get away for a short period of time. An example from this afternoon: My mother-in-law had been napping after lunch, as is her custom. We have hospital rails on the sides of her bed, and a simple ‘web’ of 1″ nylon straps over the top, from railing to railing, to prevent her from getting out of bed. But she only sometimes remembers that she needs help getting out of bed, let alone standing or moving. As I told a friend in an email a bit ago:
*sigh* Been unbelievable this afternoon.
About 2:45 I heard her moving around. Not usually a big deal, since she will shift position. But then I heard something concerning, so went to investigate.
She had managed to slide her legs up to mid-thigh out between the bars (which are horizontal), dangling them over the side of the bed. She’d then gotten tangled up in the webbing, trying to sit up. I asked her why she didn’t just call if she wanted to get up, and I got a snarly response about her not needing any help, et cetera.
After sitting there and letting her try to untangle herself and get her legs back in bed, I got her sorted out. She was still snarly, said that I just wanted to keep her in bed for no reason, that she could do just fine, thank you very much, if I’d get ‘that stuff’ out of the way. Fine. I removed the webbing, put down the rail. Some minutes later, she finally admitted that yeah, maybe she did need some help to get up and onto the potty.
She’s suitably chagrined now. That *might* last the rest of the day. Or maybe not.
That’s just one example. The whole thing, from start to finish, took over an hour. And through it I had to explain repeatedly where she was, that her mother wasn’t here, who I was, et cetera. Some of this is ‘normal’ (perhaps I should say ‘typical’) behaviour – she’ll fuss with the webbing or some such, rather than calling for help. But this is the first time that she’s tried to slide between the bars of the railing, and it is rare for her to be hostile like that for any length of time. We’ve seen other examples of behaviour that are somewhat extreme as well. I can’t prove it, but I’m certain that this is all fallout from the change first of our being gone and my sister-in-law being here, and then her being gone and my wife and I being here.
Frustrating, particularly in that it disrupts my ability to think and write further, meaning some of the stuff I wanted to get done today (such as writing some additional posts about the Centennial) isn’t going to get done. So it goes.
Jim Downey
Communion Of Dreams 