I haven’t mentioned it much, just a passing note last month, but I have been working a fair amount on the care-giving book these last weeks. And I’m about halfway done with my part of the editing work – at this point, I’m going through all of my co-author’s posts, and my co-author is going through all of mine.
In terms of actual editing work, it’s very minor, mostly consisting of looking for issues with spelling & clarity. But it is also emotionally exhausting, because each entry is a journey back into care-giving. I can only put myself through that for about an hour a day.
It is also extremely rewarding, though. Each time I work with this material – each pass through it I make – the more I find it to be powerful and affirming, and the more I think it will prove to be a very valuable resource for others who are taking that journey (or recovering from it.)
At least, I hope so.
Jim Downey
Just a quiet note, to follow up to a post from November. Our neighbor, Ray, passed away this morning.
Martha and I had been to visit him several times where he had been receiving care for his fall, the last time a bit before I went out to Las Vegas last month. It was clear then that his health was deteriorating quickly. He was happy to see us, but was no longer as mentally sharp or aware of his surroundings as he had been, and in fact he struck me as being more than a little impatient to be ‘moving on.’ It was almost as though he felt he had overstayed his welcome, living to 97.
So I had been expecting this news. Still, it is a sadness.
But I’ll remember him for as long as I grow tomatoes. One thing he did last year, when he was still very much aware of this world, was to tell me to take his tomato towers, wonderful 6′ tall box-wire supports that are about as old as I am. The last few years I had borrowed these, ‘renting them’ in exchange for keeping him supplied with fresh tomatoes through the summer, dutifully stacking them back in his yard at the end of the season. Now they’ll have a new home.
As I suppose Ray does, in our memories.
Jim Downey
Filed under: 2nd Amendment, Alzheimer's, Ballistics, Book Conservation, General Musings, Guns, Predictions, Publishing, RKBA, Science, Science Fiction, U of Iowa Ctr for the Book, Writing stuff
I spent most of yesterday re-reading Communion of Dreams, to make sure that all the little changes I’d made in the previous week were correct and to see if I could catch a few more typos. Once it was all checked and double checked, I created manuscript files in the format preferred by the publisher, appended an email, and zipped the whole thing off. If you would like to see the finished product, the CoD homepage has now been updated to have the final .pdf version.
So, now we wait and see what the publisher decides.
And speaking of the publisher, I have had a couple of queries about them. It’s a new enterprise, Trapdoor Books. I like their attitude and approach, though of course with something so new it is hard to judge. And if this works out, I hope that I can help them as much as they can help me. If it doesn’t work out, no hard feelings on my part – lord knows that I had to turn down a lot of talented artists in the years I had the gallery.
But it does have something of the same feeling as when I first started at the University of Iowa Center for the Book. That too was a new enterprise, and no one was really sure how it would work out. Now it is perhaps the most highly regarded book arts program in the country, and my almost 20 year career as a conservator has both benefited from the reputation and added to it in a small way.
So, we’ll see. It looks like things are moving again with Her Final Year, and that book could garner a lot of mainstream attention, since there is little in the care-giving literature from a male perspective. BBTI will cross 2 million hits later this month, and we’re currently planning another very large series of tests this spring which will once again generate a lot of interest in the gun world. It could be a very interesting year.
Jim Downey
Filed under: Alzheimer's, Ballistics, Book Conservation, Guns, Health, Hospice, Marketing, Predictions, Promotion, Publishing, Science Fiction, tech, Writing stuff
As I have done for the last couple of years, I like to look at the stats for my sites on New Years Day – numbers don’t lie.
But they can be a bit confusing. Here’s how. In 2009, I could say that 9,619 people downloaded some or all of Communion of Dreams. That would break down as 5,877 downloads of the original “complete” .pdf of the book, 156 copies of the revised version, 3,183 of the first mp3, and 403 copies of the first chapter. Or I could say that there were a total of 6,765 downloads, using the numbers for the “complete” .pdfs plus the minimum downloads of both the mp3 and individual chapter files (on the theory that those numbers reflect “complete” downloads of the book in those formats.) For my year-end numbers in the past I have used the latter formula, and I will do so again.
So, 2009 had 6,765 downloads. That compares to 6,288 in 2007, and 6,182 in 2008. How many people have actually read the book, I have no idea – I have heard from people that they have passed on the .pdf they downloaded to friends, and others have told me that they printed the thing out and gave copies to others. So that would boost the numbers. Then again, just because someone downloaded the thing, doesn’t mean they read it. Lord knows I have plenty of books I own but have never gotten around to reading.
Which brings up another item – back in August I mentioned that I was working on a revision because there was a publisher who was interested in the book. In November I mentioned that I had submitted the manuscript with the revisions, and was waiting for them to take another look at it. Well, I’m still waiting, though the publisher said that he was going to assign it to one of their readers and go through it himself, and would get back to me soon. I’m not complaining about the wait – six weeks or so is not at all unreasonable – but I do wonder whether he just didn’t want to give me the bad news leading up to the holidays. So, we’ll see what comes of that.
I’m also in a “wait and see” mode on my two other writing projects. My co-author on the caregiving book Her Final Year still has to finish his editing before we can proceed with that, and I haven’t had a chance to get together with my sister to really get started on My Father’s Gun. But now that the end of the year is past, I hope to make progress on both of those soon.
Other aspects of life in 2009? A mix. I did get a lot of good conservation work done, though losing the one big client in the fall due to the economy hurt a lot – I have other work, but nowhere near as much, so that has hindered my efforts to resolve long standing debt leftover from the gallery. My health is better than it was a year ago, but I still need to lose several stones. The BBTI project was a huge success through 2009, and I’m sure will continue to be a source both of work and pleasure in the coming year. Otherwise, well, if you read this blog you probably already have had your fill of my introspection.
So, goodbye 2009, and best wishes to one and all for a better 2010.
Jim Downey
“You guys are really good with him,” said the ER nurse.
* * * * * * *
The knock came at the back door as I was finishing my first cup of coffee. It was a neighbor two doors down.
“Jim, Ray’s fallen, and I need help to get him up,” he said, somewhat breathless from the quick walk over to our house.
Ray’s another neighbor, and an old family friend. He and Martha Sr shared a birthday, though he was five years older. This makes him 97. He’s been on his own for a while now, his wife having passed (he cared for her up until the final months of her life – she had Alzheimer’s) and his family long since scattered. But he was doing fine – spry, mental faculties still very sharp, and he would always consult with me on how my tomatoes were doing, offering his vastly greater experience what I should do for this or that minor problem. My wife and I, and the other neighbors, all kept an eye on him, and his family would call him a couple of times a day to keep track of how he was doing. Which is exactly what he wanted – he was adamant that he could continue to be on his own, in the house where he’d lived for 60 years.
I didn’t wait. I quickly headed out the door and across the yard, pulling out my mobile and calling my wife as I did so.
* * * * * * *
For some months now, I have been #4.
#4 on Ray’s speed-dial, that is. We set it up some time back, and tested it fairly regularly. Because though Ray was doing really well, recently he’d started having some problems with his balance. Reluctantly, he had started using a cane, then a walker. But he kept his phone with him at all times, because if something happened and he lost his balance, he wanted to have the ability to call me if he needed help getting back up or was injured.
And after his needing to call me a couple of times in the last month, I had taken to being more careful to make sure I always had my phone with me, that it was on. Recently I found myself checking it frequently, to make sure I hadn’t accidentally muted it, in case Ray called and I missed it.
This was a familiar feeling, an ingrained response. It was like always making sure I had the monitor with me while I was taking care of Martha Sr.
* * * * * * *
“Martha, I’m going over to Ray’s. He’s fallen in his bedroom, may be hurt.” Our other neighbor, the one who came to get me, has a heart condition. If I needed to move Ray or anything, I needed my wife.
“I’ll be right there.”
I went in the back door, through the house to the bedroom. Ray was there. He’d fallen, had hit his head on the corner of a small table. There was blood, but not a lot, and it was dried. He had been there a while, possibly overnight. He was conscious, and recognized me. “Oh, good, Jim – help me up.”
I quickly checked him over, asked him some questions about whether he hurt anywhere. But his answers were somewhat confused – moreso than usual. Whether from the blow to his head, or as a result of something else, I couldn’t tell.
“Help me up, Jim.”
Sorry, Ray, not this time.
My wife got there, she knelt down and did the same quick assessment I did. She looked at me, and knew what I was thinking. I handed her my phone. “Call an ambulance.”
She left the room and did so. I stayed with Ray, holding his hand. He was insistent that he didn’t need an ambulance, but he was otherwise not making sense about what had happened or how long he had been down.
There comes a point in time in dealing with someone who is in this condition when you have to make the decision as to whether you are willing to ruin your relationship with them in order to make sure they get the proper care. This is what keeps many family members from taking away the car keys of a parent, or getting them into a nursing home. For me, it was an easy choice in this case. I liked and respected Ray, valued his friendship, but he needed professional medical care.
* * * * * * *
Martha rode in the ambulance with Ray. I came home, changed clothes, grabbed something to eat, then went to the hospital. We stayed with him there in the ER through the rest of the day, along with his nephew that lives here in town. They did tests, CAT scans, all the usual things. This and that doctor came in, consulted, did their best to communicate with him. We helped, talking with him loudly until I went back to his house and got his hearing aid, but mostly we were just there to be friendly faces.
Ray stabilized, and his confusion cleared up, but there were reasons why they wanted to keep him there for observation.
This was not news Ray wanted to hear. It took a lot of convincing that it needed to be done before he finally relented. We stayed with him until they got him settled into his own room.
It is never easy to be in an ER for a long time. Late afternoon, while they were doing something with him which required a bit of privacy, Martha and I were standing outside the room, next to the nurses’ station. We were both tired, and no doubt looked it. The nurse there at the desk looked up at us. “You guys are really good with him.”
We nodded. “We’ve got a lot of experience – we cared for my wife’s mother – Alzheimer’s – until she died last year. Ray’s an old friend.”
“You guys are really good with him,” she repeated, “that experience shows.”
* * * * * * *
Jim Downey
Post Script: one of Ray’s daughters got into town last night. She had planned on coming in for Thanksgiving, anyway, and they were going to spend some time looking to find a good assisted care facility for him while she was here. Ray had come to the conclusion that the time had come to take this step. It was just bad timing that this accident happened when it did.
Filed under: Alzheimer's, BoingBoing, Health, Humor, Publishing, Writing stuff, YouTube
So, things continue. I finished editing my entries in the care-giving book yesterday, so next I need to sort out with my co-author what else needs to be done to finish that project. And I’m now through Chapter 13 of the revisions of Communion of Dreams – having trimmed 19,884 words so far. With a little luck, I should be able to finish that editing and get the revised manuscript off to the publisher this week. As you might have gathered, I am recovering fairly well from the concussion, though I now think that it was probably a bit more serious than I initially thought, including a hairline fracture. Oh well, I’m healing and that’s what matters.
This is amusing:
Via BB.
Jim Downey
Filed under: 2nd Amendment, Alzheimer's, Art, Ballistics, Guns, Humor, Music, Publishing, RKBA, University of Missouri, Writing stuff
“Hello. Can I speak with Karen?”
“Karen? Who are you calling?”
“Is this Legacy Art & BookWorks?”
*sigh* “Legacy Art & BookWorks closed over 5 years ago. Karen had moved almost four years before that. Your database is at least 9 years out of date.”
>laughter< "Oh, sorry . . . "
* * * * * * *
Yesterday morning I finished work on "November" – the 11th chapter of the care-giving book I have been working on, tentatively titled Her Final Year. The conceit is that the book is divided into the months of a year, which track the progression of the Alzheimer’s and our experience in caring. The bulk of the material for the book is drawn from my posts here (and from my co-author’s similar blog posts about his experience in caring for his mother-in-law), supplemented with emails that my wife and I sent the family and friends, discussing the day-to-day realities of what was happening.
Anyway, November is dealing with the end-of-life experience, those final months of what we went through (not the actual passing – that is appropriately enough the final chapter). So I’ve been going through and editing/tweaking material from two years ago, when we were in the deepest and most intense part of caring for Martha Sr. Just reading that stuff leaves an emotional impact, calling up echoes and ghosts.
* * * * * * *
“So, Jim, what do you do?”
We were at the big dinner for my wife’s High School reunion this past Saturday. I went as supportive spouse. Another spouse across the table was trying to make small talk. I already knew that he was an engineer – he and my wife have worked together professionally, and they had exhausted that material for discussion.
How to answer that? I am sometimes amused at the options.
“I’m a book & document conservator.” I like this answer.
“I’m sorry?”
“I repair rare books and documents. Mostly historical stuff.”
* * * * * * *
We got an invitation to an opening reception over at the University of Missouri, for a show of portraits which included work of a friend. It was a good excuse to get out of the house a bit.
An interesting show, pairing up historical portraits with more modern work by notable artists. It was good to see our friend and his wife, some other artists that we know.
But I spent most of the time there talking with others about how much they missed my art gallery. It’s been five years, but still everyone wants to talk about how great it was, how much of a shame it was that we had to close it.
* * * * * * *
“So, where do you go shooting?” I asked the engineer, after he had mentioned that he and his son had been out that morning.
“Green Valley.”
“Nice range.”
“You shoot?”
“Yeah, a bit.” I looked up with a smile. It’s always fun to see how guys will react to this. The more macho types will sometime use it as a cue to start talking about their big, powerful guns, or bragging in some other way. But I figured this engineer would be more subtle. “Handguns, mostly, for me.”
He nodded. “Yeah, I do a fair amount of that, too. Even reload.”
Reloading is a measure of a fairly serious shooter, and someone who has the patience and attention to detail necessary. I nodded. “Yeah, me too.”
His eyebrows went up a bit. I took a business card out of my jacket pocket, flipped it over and wrote down a url on the back. I passed it across the table to him. “You might be interested in this.”
“Ballistics by the inch dot com, huh?”
I smiled, explained.
* * * * * * *
“This is James Downey.”
“Um, is this Legacy Bookbindery?”
“Same thing. What can I help you with?”
“I wasn’t sure this number was any good. I got it out of a magazine article from 1993. Do you still do book conservation?”
“I do indeed. What can I help you with?”
* * * * * * *
Last night I finished the revisions for Chapter 11 of Communion of Dreams. Trimmed another 1,449 words from the text, bringing the total I have edited out in this rewrite to over 17,500. It still takes a lot of attention to get through it, but from here on there will be fewer actual sections/passages trimmed out.
* * * * * * *
He flipped over the card before he put it in his pocket. “Communion of Dreams?”
“Yeah, a novel I wrote.”
“Published?”
“Well, not yet – not conventionally, though I have a publisher interested. But over 19,000 people have downloaded it.”
He looked at me.
I shrugged. “I’ve led an odd life.”
* * * * * * *
Jim Downey
*With apologies to Ian and the gang.
As noted, I have been spending a fair amount of time working on the care-giving book, about the years that my wife and I cared for her mother here at home. And mostly this has consisted of going through all my old posts here which touched on that experience – there are at present 125 posts tagged with ‘Alzheimers’. Add in email excerpts, and the similar amount of material from my co-author, and you can get a sense of just how much editing and organizing work is involved.
But there’s also something else. It’s a odd sense of vertigo I get from re-reading this stuff. Because I am now far enough from being in the middle of it to have some perspective, but still close enough that a lot of the emotional content is immediately accessible and somewhat overwhelming. And then there’s articles like this one in the NYT by Natalie Angier, which really resonate:
Brain Is a Co-Conspirator in a Vicious Stress Loop
If after a few months’ exposure to our David Lynch economy, in which housing markets spontaneously combust, coworkers mysteriously disappear and the stifled moans of dying 401(k) plans can be heard through the floorboards, you have the awful sensation that your body’s stress response has taken on a self-replicating and ultimately self-defeating life of its own, congratulations. You are very perceptive. It has.
As though it weren’t bad enough that chronic stress has been shown to raise blood pressure, stiffen arteries, suppress the immune system, heighten the risk of diabetes, depression and Alzheimer’s disease and make one a very undesirable dinner companion, now researchers have discovered that the sensation of being highly stressed can rewire the brain in ways that promote its sinister persistence.
Ayup. Independent research confirming a lot of the stuff I talked about in all those Alzheimer’s posts. Another excerpt from the article:
Unfortunately, the dynamism of our stress response makes it vulnerable to disruption, especially when the system is treated too roughly and not according to instructions. In most animals, a serious threat provokes a serious activation of the stimulatory, sympathetic, “fight or flight” side of the stress response. But when the danger has passed, the calming parasympathetic circuitry tamps everything back down to baseline flickering.
In humans, though, the brain can think too much, extracting phantom threats from every staff meeting or high school dance, and over time the constant hyperactivation of the stress response can unbalance the entire feedback loop. Reactions that are desirable in limited, targeted quantities become hazardous in promiscuous excess. You need a spike in blood pressure if you’re going to run, to speedily deliver oxygen to your muscles. But chronically elevated blood pressure is a source of multiple medical miseries.
“Think too much.” Gee, I don’t know anyone who does that.
Well, I mean, those 125 posts about being a care provider can’t possibly be evidence of that, can they?
Jim Downey
An old SCA friend was in town for a visit, and we got together for lunch. After, we came back to the house, since she hadn’t been here since forever. As we went through the place, showing her how we had settled in, we got back here to my office where I also have my reloading bench and my big safe for guns and rare books waiting to be worked on. She hadn’t remembered that aspect of my life from way back when, and was a little curious. After discussing the matter a bit, she asked whether I also hunted.
“Haven’t in years, though I used to a fair amount. Grew up hunting. I’m thinking that it’s about time I did a bit again. We’ll see.”
* * * * * * *
I just checked my blood pressure. 123/90. Yeah, the diastolic is a little high, but my bp tends to be up a bit in the morning. Still, that is dramatically better than when I wrote this 11 months ago:
Actually, my blood pressure was scary bad. When the aide took it earlier, she was startled by how high it was. Let’s put it this way – it’s in the range where if it were just a bit higher, hospitalization would be indicated in most cases. If I walked into an ER with that blood pressure, people would start rushing around.
What was my bp then? Well, I was hesitant to say, since it was so bad, and I didn’t want to cause concern among my friends and family. But it was averaging 230/120. Like I said, scary bad.
But as time has gone on, and I have worked with my doc to tweak meds this way and that, we’ve gotten it under control. As I expected we would. Which has allowed me to write here that I am a lot healthier than I really have any right to be, considering the stresses I have placed myself under these past few years. So it was from that perspective that I had this email exchange with a friend this morning:
Me: “Though I don’t actually feel old yet. I did for a while, there, but not so much now.
Hmm. I should think more about that.”
My friend: “That would make sense, actually. You’re not in pain from your own chronic illness, nor exhausted from trying to be a caregiver for someone in the last throes of hers.”
* * * * * * *
I never really *enjoyed* hunting. Not in the sense some people think of hunting as just going out and killing things, anyway. No, I grew up hunting from a young age, and just took it for granted that it was something you did. When I got older, and grew more reflective on why I did the things I did, I still found that hunting was a good thing for me to do.
Why? Well, I thought then, and still think today, that if you are a meat-eater you should occasionally actually go kill something and then clean and butcher the animal. It helps keep me honest about the fact that with every bit of meat I eat that an animal died.
Oh, there are other aspects of hunting I enjoyed. Getting out in the woods/fields. Challenging my skill with firearms. Making me more aware of the sights and sounds around me. Maybe being with friends or family, though I have just as often hunted alone. I usually enjoyed sharing the meat with friends – wild game just tastes so much better, and few people have the opportunity these days to enjoy it.
But I didn’t enjoy cleaning the game, or even the actual killing part. Necessary, yes. But not enjoyable. Not for me.
* * * * * * *
I have been . . . avoiding . . . working on the caregiving book for the last couple of months. Oh, not consciously. But it is clear to me upon reflection that I have managed to keep myself too busy with this, or that, so that I never seemed to get back to working on the book.
It is about 2/3rds done. Maybe more. My co-author and I made huge progress on the book through the spring. Seriously, about two or three months of work would finish it.
Then why avoid it?
Well, I’ve been thinking about that a lot this last week or two. And I think that it has to do with the fact that I am feeling healthy. That I am largely recovered now from the years of being a care provider. Working on the book earlier this year helped a lot in getting me to this point – helped me to understand and see the whole experience in some context. Yeah, it was really emotional. But coming to terms with those emotions was a good thing. I feel like I have slain my dragons.
And now I just have the carcass to deal with.
Understanding this now, I think it’ll be relatively easy for me to get back to it. I have something to share with others – this isn’t so much about me working through my issues, not any more. It is about helping others to work through theirs. It is sharing the bounty of my hunt, as it were.
Jim Downey
Filed under: 2nd Amendment, Alzheimer's, Ballistics, Book Conservation, Gardening, Government, Guns, Health, Society
I mentioned in passing a couple of times in the last week that I’d been busy. Part of it was routine management of the BBTI re-launch (we crossed 900,000 hits yesterday), part of it was also just getting a lot of conservation work done (which is going to be an ongoing theme for the coming weeks), but a big part of it was setting up a new forum for neighborhood associations here in Columbia.
This was something completely new to me – so I had a bit of a learning curve to get through. Which is fine, since it’s good to do something completely different now and then to keep things fresh. And little or nothing may come of it; I set it up because I think it is a necessary component for this kind of grass-roots organizing, but I long ago learned that you can’t force people to care about something, at least not enough to actually take action. But I also learned a long time ago that unless I stepped forward to do something I thought was necessary, it too often just wouldn’t get done.
And I think that is what amuses me about this whole thing. I didn’t know how to set up a forum. But I knew that the appropriate software was available to make the process relatively painless (true – and now having done it once I’d have no qualms about doing it again). There was a need, and no one else had yet filled that. So . . . I volunteered.
A small thing. And, like I said, nothing much may come of it. But this is the only way to make progress – to try things out. To plant a seed and try to help it grow, maybe even to grow with it.
And now I can turn my attention back to finishing the Caregiving book, with these two other projects more or less completed. Onward, and upward.
Jim Downey
Communion Of Dreams 