Filed under: 2nd Amendment, Alzheimer's, Ballistics, Guns, Health, Hospice, Sleep
Sorry I haven’t posted much the last couple of days. Honestly, I am in a funk – the sort of deep-seated inertia which comes after completing a protracted project. On one level, it is just the downturn from the ballistics testing. But more, it is the still lingering exhaustion from care-giving.
Which is not surprising. You can’t expect to recover from years of poor sleep and intensely caring for someone else 24 hours a day in just a few weeks. Particularly not when we’re still very much dealing with resolution of the estate (strangers are here right now going through things, giving us estimates on the value of some items) and trying to play catch up on professional and personal obligations. We collapsed immediately following the memorial service for Martha Sr, but then tried to pretend that we were recovered, to get on with the life which had been put on hold for so long.
But now it feels like it is catching up with me again. Like how a battery can get a ‘surface charge’ quickly, but also wears out again quickly. I need a prolonged period of recovery and recuperation. That, however, is not likely to happen. There are books to repair, bills to pay, years worth of things to catch up on.
So, forgive the slight break. I’m not burned out – I still have a lot to say, to do, to write about here. I’m just tired.
Jim Downey
Last night, my wife washed off the blackboard which hangs in the kitchen.
* * * * * * *
I just got back from a quick trip to KC to pick up the first large load of books from the seminary. Simple. Got up this morning, usual routine, jumped in the car and drove to KC. Met with the client. Selected about 60 volumes to start with, wrapped them in cling film, boxed ’em up. Put the boxes in the car, drove home, pausing to check out a new store just off the highway – and amazing myself that I didn’t have to call home to coordinate the slight delay.
* * * * * * *
I sent this note to a friend:
Mostly I’ve been getting work done, at least in the afternoons. Feels good to be able to focus in and do it – a nice affirmation, and there is that joy that comes with doing something well which most people can’t do. Still struggling to shake off the last effects of the flu, which is annoying, but there is clear progress.
And that has been the real change this week. Each afternoon I’ve been able to just dive in and work. For hours. Very productively. Such a change.
* * * * * * *
It’s the little things. Yes, there are the larger changes: more sleep, no need to go around always listening to a monitor, being able to come and go as I please. Those I expected, even if they have taken some adjustment. But it’s the little things that catch you unprepared.
Last night, my wife washed off the blackboard which hangs in the kitchen.
The blackboard which for years had our contact phone numbers on it. Those were first put there by Martha Sr. years ago, when her memory was becoming undependable and she might need to call someone for help. Then they remained even once we moved in here, since both my wife and I still had our jobs elsewhere during the day. After I closed my gallery and moved home that was no longer the need, but by then they were an institution. More recently, long after Martha Sr had stopped using the phone, the numbers were there as a quick resource for the various respite care workers and whatnot, in the event of an emergency.
Last night, my wife washed it clean. It was time to move on.
* * * * * * *
Jim Downey
Filed under: Alzheimer's, Book Conservation, Firefly, Flu, Health, Hospice, Joss Whedon, movies, Predictions, Science Fiction, Serenity, Sleep, Society, Writing stuff
Last night we settled down with some dinner to watch a bit of Firefly, settling on Serenity (the episode, not the movie). At one point fairly early on, when plans have gone south at several junctures, the captain of the ship (Mal) is considering options, trying to make the best of a not-great situation. There’s this little bit of dialog:
MAL: We don’t get paid for this, we won’t have enough money to fuel the ship,
let alone keep her in repair. She’ll be dead in the water anyhow.
(Mal turns to the others)
We just gotta keep our heads down and do the job. Pray there ain’t no more surprises.
I looked at my wife, and we just nodded to one another.
* * * * * * *
We did a hard thing. And we did it well.
Caring for my MIL for years somewhat warped my perspective. First and foremost in our consideration was always what her needs were and how best to meet them. I’ve often talked about what that meant in terms of rewards and sacrifices, and I don’t intend to rehash that now.
But a couple of things have changed with her passing. First off, is the odd sense of disorientation. I’ve compared it in discussion with friends with almost having a sense of agoraphobia – a nervousness when out in the world I’ve never felt before. It’s really just a conditioned reflex, and will fade as I adjust to the lack of need to always being worried about Martha Sr.
Another thing which has changed is the need to return to something resembling a ‘normal’ life, with the usual requirements of work. I don’t mind work, never have. My life has never been easy (though it certainly could have been harder), and I’ve never expected it to be otherwise.
But sometimes you wonder if maybe it couldn’t be just a little bit easier.
Caring for Martha Sr those last weeks was more demanding, and lasted longer than anyone expected. Getting hit with the flu so hard following seemed a bit gratuitous, in the sense of the universe having fun at our expense. Both my wife and I are behind on our work, and while our clients understand, that doesn’t help the cash flow situation. I knew these days would come, and things would be a little rough for a while until we got settled again. But we’ll manage.
* * * * * * *
We did a hard thing, and we did it well.
What has come of a bit of surprise has been how some people have responded to that. There’s been some discord in the family about the disposition of Martha Sr’s possessions, borne mostly out of a misguided sense of guilt, from what I can tell. It’s really unfortunate, but everyone has their own way of reacting to death. If we’re lucky, with time the matter will sort itself out with a minimal amount of damage.
I’ve also seen others in different forums who have almost felt like they had to defend their own decisions regarding a loved one who has Alzheimer’s or some other debilitating illness leading to hospice care. I’ve witnessed those who almost seem resentful that we did what we did, because it somehow implies that they did less – that they cared less.
No. We were able to make this work out. Barely. Everyone has a different situation, and each family, each person, must come to their own conclusions, their own solutions. None is better or worse than another. Because my wife and I don’t have kids, we didn’t have to juggle that aspect of life at the same time. Because we live here in the same town as Martha Sr, and have professions which allow a considerable flexibility in terms of work hours, we were better able to adapt to providing care at home than most. Our solution worked for our situation – barely. Those final months were very demanding, and I will admit that I was pushed further than I would have thought was possible, and failed and succeeded in ways I never expected.
I will not judge another – this experience has taught me humility.
Jim Downey
Filed under: 2nd Amendment, Flu, General Musings, Guns, H. G. Wells, Health, Pandemic, Predictions, Preparedness, Science Fiction, Sleep, Society
Wow. It’s been a while since I was this sick, this long. Nothing life-threatening, just the flu that’s going around. Of course, I was completely worn out by the last few weeks of caring for Martha Sr, with no reserves to draw upon to fight this virus, so it comes as very little surprise that I haven’t been able to just shrug off the bug and get better.
It is this sort of experience that drives home the statistics pertaining to how many soldiers over the ages died due to disease rather than battle – I don’t have the numbers right at hand, but generally it has been concluded that at least as many soldiers have died due to illness than from battle related injuries, at least up until the last century. Why? Because soldiers are frequently pushed past the point of physical exhaustion, denied adequate sleep, with poor quality or inadequate food, and under conditions which foster rapid transmission of disease from soldier to soldier.
And that’s one of the things that I always chuckle about when I read about TEOTWAWKI scenarios on this or that forum. Often, particularly when such threads come up on a firearms-related forum, people will get way too preoccupied with guns and ammo, and lose track of the fact that those tools are completely useless if you are too sick or too tired or too hungry to employ them. Get sick, and your superior collection of guns or other tech mean nothing. H.G. Wells knew this, while most of us have forgotten it.
I’ll write more when I am up to it.
Jim Downey
Filed under: Alzheimer's, Daily Kos, Health, Hospice, Publishing, Sleep, Society, Writing stuff
No, no, not downloads of the novel. That would be something. Rather, that’s the number of words I’ve written in the last year in posts here which have the ‘Alzheimer’s’ or ‘Hospice’ category tags. Why is that significant?
Because I am thinking about using those posts as the basis for a book about being a care-provider. With the feedback I got to my posts here, and those I cross-posted at UTI and Daily Kos, it became evident that there is a real interest in this topic. Because almost everyone either knows someone with Alzheimer’s, or they know someone who has a family member with Alzheimer’s, or they are afraid of developing the disease themselves.
With editing and culling of the current material, I probably have about 30,000 words done. If I supplement that material with explanatory notes and reflections, I can easily boost that to 60 or 70,000 words, which should be more than sufficient for this kind of memoir. And while my thinking on this is still rather vague, I’d probably see if I could pair-up with the Alzheimer’s Association, with some or all of the proceeds of the sale of the book going to help that organization with their research and educational programs.
It’s a thought.
Jim Downey
I mentioned a couple of days ago that I thought I was coming down with something, be it just a cold or some mild version of the flu. Monday and yesterday were marginal, as I tried to get stuff done and see which way things were going to go.
They went south. More specifically, the incipient cold has now settled into my throat and chest. Last night I didn’t get a lot of sleep, and this morning I feel fairly miserable. Ah well. I cannot say that I am surprised – after such a long battle in caring for Martha Sr, and then pushing to get through the memorial and whatnot last weekend, my immune system is shot.
And that’s OK, really. With a modicum of care, I can get through a winter cold/flu in a few days time. Certainly the extra sleep won’t hurt me. And while there are plenty of things I should be doing, no one is going to come banging on my door. I’ll recover from this, then move on. As Emerson said, “When it is dark enough, you can see the stars.”
Jim Downey
Filed under: BoingBoing, Bruce Schneier, Emergency, General Musings, Government, Preparedness, Psychic abilities, Science Fiction, Sleep, Society, Terrorism, Writing stuff
[This post contains mild spoilers in the first paragraph. The rest is safe, even if you haven’t read the novel.]
One of the major themes of Communion of Dreams is examining the nature of reality. The title of the book alone gives this away, though I am constantly surprised by comments people make which indicate that they didn’t really take that very big hint into consideration when reading the book. Anyway, the whole notion is that we live within a controlled reality, in that there are artificial limits on what we understand of the outside universe. I use dreams as one access point for information which gets around these limits, and then more fully explore the psychic abilities which are latent in humans later in the book.
I’m a big fan of the TV series Foyle’s War, with its excellent acting and attention to historical details. It provides a brilliant insight into what it must have been like in the United Kingdom during World War II, and shows both the bravery and the cowardice of a population under real threat from a superior enemy. In particular, those episodes set early in the war (during the Battle of Britain) show how the possibility of invasion by Nazi Germany pushed people to do both inspiring and dispiriting things, but mostly how the entire population just ‘got on with it’, coping with the threat and their fears pretty damned well.
Which is why when I read things like this, I just cringe:
Hundreds Evacuated from North Sea oil platform after ‘dream’ sparks bomb alert.
A 23-year-old woman is expected to appear in court today after reports of a bomb on a North Sea oil rig sparked a full-scale emergency operation involving the army, RAF and police.
According to one report, the scare started when a woman employee on the rig was overheard recalling a dream she had had about a bomb on the platform. Jake Molloy, general secretary of the Offshore Industry Liaison Committee, one of the biggest unions representing offshore workers, said: “It was complete madness. This girl had a dream about a bomb being on board and she was a bit shaken. The next thing anyone knew workers were being evacuated.”
He said the rumour that a bomb was on the accommodation block – or “flotel” – had spread to senior managers within an hour. “It was complete madness on behalf of everyone. There was never any reason to evacuate the platform.”
Read the whole thing. It is clear that this was nothing short of bureaucratic panic. What do I mean? I mean that when bureaucrats are given procedures which they have to implement in order to cover-their-asses, they will do so whether or not the situation really calls for it, and no matter how disruptive and pointless the exercise will be. This is the exact same mindset in operation with the TSA’s Security Theater (credit Bruce Schneier), but played out in a more dramatic fashion.
Somebody overheard someone else talking about a disturbing dream they had. And they panicked. It’s that simple.
We’ve allowed the bureaucrats to so control our lives out of fear of being held responsible, that we’ve become afraid of our own dreams. How pathetic. How sad.
Jim Downey
(Via BoingBoing. Slightly edited version cross-posted to UTI.)
Filed under: Flu, General Musings, Health, N. Am. Welsh Choir, Predictions, Preparedness, Religion, Sleep, Weather
The memorial in all its details went off just fine yesterday. My wife’s quartet from the North American Welsh Choir did a wonderful performance. The minister conducting the ceremonies (an old family friend) kept things running smoothly and without a lot of inappropriate god-bothering. Friends and family made tributes to Martha Sr. All that you could ask for in a memorial service, even good weather (almost 50 and sunny) for early February here in the Midwest.
We had a relaxed reception at my Brother-in-law’s place, plenty of good food and good company. Then a relaxed evening here with some of the family who came in from out of town. And likewise this morning an early brunch before some folks needed to catch flights home.
And now I feel adrift. Unsure. All the scheduled things are resolved. Other things pending, but nothing which really needs either my involvement or direction. This could be a touch of something I’m coming down with (there were plenty of people with the usual colds/flus common this time of year). My immune system is shot, for the same reasons that my weight is so excessive: lack of sleep, insufficient exercise, general stress. I look forward to getting it back.
But it could also simply be the change borne by Martha Sr’s passing. All the routines, all the usual focus of my life, are no longer applicable. A friend said that it will take time to mash down the grooves of my life and carve new ones, and she’s right. I expect it will take most of the coming year to make the change complete.
So, adrift. The storm has passed, and now things are quiet.
I think I’ll get a nap.
Jim Downey
Filed under: Alzheimer's, Doctor Who, General Musings, Health, Hospice, Migraine, Predictions, Sleep
I was half expecting it.
As mentioned previously, I suffer from migraines upon occasion. Perhaps a bit surprisingly, the last couple of months have been fairly light in that regard. But I have one now, of the “stress-release” variety.
Last night, for the first time in the better part of a week, we cooked dinner and relaxed watching a couple of episodes of Doctor Who (more on my getting acquainted with the new series later). I had a couple of scotches, but that’s not a lot for me over the course of the evening. I fell asleep later in front of the computer, catching up on news of the world. In other words, I was starting to spin down from recent events.
I went up and went to bed, while my good lady wife did the dishes and caught up on some email. I woke sometime after midnight (not sure when) from the pain of the migraine. Got up, went and took some OTC stuff I hoped would shut it down, went back to bed. Woke up again about 4:30, pain worse. Got up and took some more OTC stuff and something stronger to give it a boost. Unfortunately, those meds include a fair amount of caffeine, so getting back to sleep was not much of an option. I laid down, let them work for a while, then got up.
It may seem odd to you that I would be suffering a stress-release migraine going into what is likely to be a fairly stressful and emotional weekend, what with the memorial service tomorrow and all. I’m fairly introverted, and the prospect of a large public gathering and all that concentrated emotional outpouring is rather daunting.
But that is nothing in comparison to the stresses of caring for someone with dementia who is dying. Even now, all my instincts and conditioned reflexes are concerned first with taking into account where Martha Sr is, who is keeping track of her, what needs to be done next in the usual care regimen. Yesterday, returning from errands I needed to run, I glanced at her bedroom window as I drove up the driveway, to see whether my wife had her up from her afternoon nap and had opened the drapes. This morning before grinding my coffee I went to shut the door from the kitchen in order to muffle the sound and not disturb her sleep. And those are just two of the dozens of examples I could cite from the last 24 hours. It will take months, at least, to set aside these reflexes, to fully become ‘free’ of the ingrained habits of years.
So, yeah, I have a migraine. Not horrid, with the meds I have in me so far, though this post may be a bit less coherent than it could be. I should still be able to play house-elf today in preparation for the visitors we will have this weekend, and to make the memorial book for the service tomorrow. If it doesn’t get a lot worse I should even be able to function well during the public outing tomorrow (I got a lot of experience with that sort of thing while I owned the art gallery). But there it is – perhaps the first marker of the real change in my life. We are, after all, born in pain.
Jim Downey
Filed under: Alzheimer's, Feedback, General Musings, Health, Hospice, Marketing, Predictions, Press, Promotion, Science Fiction, Sleep, Society, Writing stuff
I find it odd, but somehow telling, that the obit for my MIL has gotten the most hits of anything I’ve posted here previously, and as a result I’ve hit a new “best day” for the blog today. Ah, well.
The newspaper coverage of her passing can be found here and here.
* * * * * * *
And that’s not the only news about us. In a strange twist, the same issue of the Tribune which contains Martha Sr.’s obituary also has this piece about this year’s Notable Historic Properties. Which includes our home (second from bottom on that page.)
* * * * * * *
While I was being preoccupied with caring for Martha Sr. in her final days, there seems to have been a burst of activity with the novel. I don’t know if someone posted it to some websites or what, but in the last week almost 500 people have downloaded the thing. If anyone knows what is behind this, drop me a note or leave a comment if you would be so kind. Oh, that pushes the total downloads over 7,000 – thanks, everyone!
* * * * * * *
Got this very nice note from someone who had just downloaded the book and started reading it. ‘Rich’ said:
Thanks for making your SF novel available. I am now in the middle, and you’ve REALLY got my interest. This is a good thing.
I have only noticed 2 very minor technical things that I think most people would not notice, but being an engineer and trained in physical sciences, I saw them.
In the first description of the airlock on Titan, using water to wash off tholin dust would be difficult as you have described it. If the Titan atmosphere were pumped out to a vacuum, liquid water would boil off instantly, unless there were another replacement atmosphere first.
When Jon first breathes the air inside Darnell’s dome, “the usual sharp whiff of methane” – Methane is odorless, needing to have mercaptans added so we can smell it.
Like I said, these are small details, and do not detract from my enjoyment of the story.
D’oh! My response:
Well, thanks! The first can be easily changed with a tweak to the description (which is what I actually envisioned – the new ‘Earth normal’ atmo being pumped in first, then things flushed with a water rinse), but I didn’t know that methane was odorless. Huh. Silly me – it’s the same as ‘natural gas’, isn’t it?
No worries, I can tweak that by giving the tholin precipitate some kind of smell, and rejigger the text to reflect that. But I would not have caught it without your help.
See, kids – you write me, you’ll get a real, personal response! Well, sooner or later. Just because the novel has now been downloaded 7,000 times and I’m well on my way to becoming a famous and fabulously wealthy author, doesn’t mean I won’t answer my email . . .
* * * * * * *
And, lastly, thanks again to all who have commented or sent messages about Martha Sr.’s passing. It has been much appreciated by us.
Best,
Jim Downey
Communion Of Dreams 