Filed under: Alzheimer's, Amazon, Feedback, Health, Kindle, NPR, Preparedness, Society | Tags: Amazon, blogging, care-giving, caregiving, cerebral palsy, dementia, feedback, free, health, Her Final Year, hospice, jim downey, John Bourke, Kindle, KXJZ, NPR, predictions, promotion, reviews, stroke
NPR recently did a very good series looking at family caregivers — those who are caring for a family member who has dementia or has suffered a sudden serious illness/injury or lives with a challenging birth defect. I thought that it was particularly good in highlighting how the traditional image we have of caregivers has been changing. Installments in the series concerned parents caring for a 16 year-old son with cerebral palsy, a 46 year-old woman caring for her sister who suffered a devastating stroke (as well as their father who has dementia), and a retired man who cares for his wife of 42 years who has dementia.
None of it is easy to listen to. None of it is easy to contemplate. I think all of us shy away from the thought of such a responsibility. I think all of us wonder whether or not we would be adequate to the challenge of caring for someone at this level.
Three years ago we published Her Final Year. In that time the book has been downloaded nearly 10,000 times. And when people read it, they find it a huge help, as seen in reviews and in plenty of comments which people have made to us.
But I know that many of those 10,000 downloads, perhaps even most of them, have never been read. Many people are so daunted by the idea of caregiving that they just can’t bring themselves to read the book. I know a couple of people who are currently *in* a caregiving role who haven’t been able to bring themselves to open the book, because they’re afraid that they can’t face the experience.
I understand this. Contemplating being a caregiver … or being someone who needs a caregiver … is frightening. The experience is incredibly stressful. Exhausting. Financially difficult. That comes through in the NPR series, and in our book. In spades. From the second story cited above:
“The experience for these caregivers is quite burdensome, emotionally and physically,” Hoffman says.
The work these family caregivers are doing would be enormously expensive if their loved ones were instead in nursing homes or other institutions, Hoffman says. But the caregivers also often find they must cut their hours at work or, as in Loretta’s case, give up outside jobs in order to care for their relatives.
“In effect,” Hoffman says, “we are taking care of the most vulnerable in our society — aging adults who have chronic care needs — by placing the burden on the backs of some of the people who can least afford to do … those who are themselves economically fragile and vulnerable.”
Little wonder people don’t want to picture themselves in that role. It’d scare the hell out of anyone with any sense.
But you know what? There are also incredible rewards which come from caregiving. It may be hard to believe, but as hard as the experience is, there are real benefits. We try and convey that in the book. I try to explain to people how I am a much better person now for having gone through that. And that I would not wish to go back and erase those difficult years for anything. But here’s a bit from the third story cited above which illustrates what I mean:
Dementia has transformed her into someone who’s dependent and vulnerable. That’s triggering changes within Rick, too. He’s noticed himself gravitating toward traits Marianne was known for, like empathy.
“The importance of listening and caring for others. Now I can see why that is so important and why you can go through life just giving and feeling totally satisfied. You know, that’s a good thing,” Rick says.
Marianne may no longer be the woman Rick married, but he says she’s still helping him become a better husband.
Three years. The actual anniversary is July 15th. And Her Final Year will be available for free download starting that day and going through the 17th. Please, download it.
But more importantly, read it.
Thanks.
Jim Downey
Filed under: Alzheimer's, Amazon, Connections, Depression, Feedback, Health, Hospice, Humor, Kindle, Science Fiction | Tags: Alzheimer's, Amazon, blogging, care-giving, Communion of Dreams, dementia, feedback, free, health, Heidegger, Her Final Year, hospice, jim downey, John Bourke, Kindle, reviews, Science Fiction
That’s how a new review of Her Final Year opens. Here’s another bit:
The caregiver puts up with that out of love and decency. This book describes these things in the form of daily and weekly accounts as well as diary log pages of personal fear and depression and exasperation and recurring bubbling senses of humor. I loved this because it made me cry and it made me laugh. It’s not all drudgery. It’s hysterically funny at times. But it wouldn’t be funny at all if you didn’t love the patient. This is a book of love…
So often people see the words “Alzheimer’s” or “dementia” or even “care-giving” and just move on, thinking that the book (and the experience) is nothing but darkness and depression. And yeah, there is darkness there, but to borrow a phrase from Communion of Dreams/Heidegger: “That which emerges from darkness gives definition to the light.”
We’re coming up on the three-year publishing anniversary (July 15). If you haven’t yet read Her Final Year go ahead and do so. If you want to wait a month, the Kindle edition will be available for free download around the anniversary.
And if you have read it, please consider posting your own review on Amazon or elsewhere. It helps.
Thank you.
Jim Downey
Filed under: Alzheimer's, Amazon, Artificial Intelligence, Brave New World, Connections, Feedback, Genetic Testing, Health, Hospice, Humor, Kindle, Marketing, movies, Promotion, Publishing, Science, Science Fiction, tech, Writing stuff, YouTube | Tags: Aliens, Alzheimer's, Amazon, artificial intelligence, blogging, direct publishing, DNA, feedback, free, health, Her Final Year, hospice, humor, jim downey, John Bourke, Kindle, movies, promotion, science, Science Fiction, Scrivener, St. Cybi's Well, synthetic biology, technology, writing, www youtube
Catch this news this week?
Synthetic biology: New letters for life’s alphabet
The five bases found in nucleic acids define the ‘alphabet’ used to encode life on Earth. The construction of an organism that stably propagates an unnatural DNA base pair redefines this fundamental feature of life.
* * *
Sorry about the sparseness of posting lately. I’ve been … busy. Have had a couple of interesting things happen which could play out in some very good ways. One is still enough in an embryonic stage that I won’t mention anything about it yet, but the other is far enough along that I’ll share: there’s a literary agent who is potentially interested in representing me, something which I have been thinking about for a while.
And it seems like a good enough fit that I took all of last weekend to put together a submission package for formal consideration. That meant going through and doing fairly thorough revisions to the first few chapters of St Cybi’s Well, using the feedback I have gotten from half a dozen ‘beta readers’, as well as composing a formal synopsis of the book. Frankly, both were a lot of work, and somewhat skewed my normal work schedule such that it is just now getting back to what passes for normal in my life.
But it was also helpful, and forced me to clarify some things which I had left unfocused for the rest of the book. Because of the way I am writing this (using Scrivener), it has been fairly easy for me to block out both the overall arc of the book as well as character developments. But doing so has been based on chapter notes more than anything, meaning that it was still somewhat in flux. Creating a full synopsis meant that I had to put the whole thing into one coherent document. And even though it was something of a pain in the butt, the result is helpful.
I’ll keep you posted as to any concrete developments.
* * *
Remember this scene from Aliens?
Considered a classic, and rightly so. But I’ve always thought that a big part of the brilliance of it is how it sets up what happens immediately after:
Back at the groups’ table, Bishop holds up his hand and examines a tiny cut closely.
BURKE: I thought you never missed, Bishop?
To Ripley’s horror, a trickle of white synthetic blood runs down his finger. Ripley spins on Burke, her tone accusing.
RIPLEY: You never said anything about an android being on board! Why not?!
BURKE: It never occurred to me. It’s common practice. We always have a synthetic on board.
BISHOP: I prefer the term ‘artificial person’ myself.
BURKE: Right.
* * *
Oh, one more thing: in observation of Mother’s Day, the Kindle edition of Her Final Year is available for free download through Sunday, May 11th. If you’re new here, just a quick note: this is our care-giving memoir about the challenges and rewards of caring for someone with dementia, as well as the long recovery/reflection period which comes after. It seems to have helped a lot of people. Perhaps it can help you or someone you know.
Jim Downey
Filed under: Alzheimer's, Amazon, Connections, Health, Italy, Kindle, Marketing, Promotion, Publishing, Science Fiction | Tags: Alzheimer's, Amazon, blogging, care-giving, Communion of Dreams, direct publishing, free, health, Her Final Year, Italy, jim downey, John Bourke, Kindle, promotion, Science Fiction
OK, now that the foolishness of April First is over and done with, a quick update on how things are going in the two-day promotion.
Currently, just shy of 800 copies of Communion of Dreams have been downloaded worldwide. The bulk of those are here in the US, though there are decent numbers in Europe (including one in Italy – been a while since seen one there!) and Canada. Plus a couple in Australia and another one in India. I still think that’s really cool. Anyway, Communion of Dreams is currently #1 in the Hard Science Fiction subcategory of the free Kindle store, #11 in general Science Fiction, and #286 overall of all books. Not bad.
Her Final Year is doing less well, but still respectably, with 50+ downloads worldwide (including in India and Australia!). It is #1 in the Aging and Elderly Parents subcategories. Nice!
So, the promotion continues today: get your Kindle edition copy of either or both books, if you haven’t already done so! And remember, you don’t actually need to own a Kindle — Amazon has a free Kindle emulator for just about every platform out there.
Jim Downey
Filed under: Alzheimer's, Amazon, Connections, Feedback, Health, Humor, Kindle, Marketing, Promotion, Publishing, Science Fiction, Society | Tags: Alzheimer's, Amazon, April Fools, blogging, care-giving, Communion of Dreams, direct publishing, feedback, free, health, hospice, humor, jim downey, John Bourke, Kindle, promotion, reviews, Science Fiction
From giving away copies of my novel and our care-giving memoir, that is.
Yup, in *spite* of the fact that today is April Fool’s Day, or perhaps precisely BECAUSE today is April Fool’s Day, both Communion of Dreams and Her Final Year are free to download all day today. No joke. Really!
Though I’d like to think that perhaps this new review posted on Amazon is a joke:
just OK, March 31, 2014
Amazon Verified Purchase(What’s this?)This review is from: Communion of Dreams (Kindle Edition)usually my kind of story, but felt it took too long to get to the heart of the story. Never felt “connected” to the characters. OK for a free book
Ouch. Ah, well, that makes three ratings each for one, two, and three stars, out of a total of 73 ratings/reviews. Can’t make everyone happy.
But I can try, at least by making the books free to download. Today. And tomorrow. So go get yours!
Jim Downey
Filed under: Alzheimer's, Amazon, Hospice, Kindle, Marketing, Promotion, Publishing, Science Fiction | Tags: Alzheimer's, Amazon, blogging, care-giving, Communion of Dreams, direct publishing, free, Her Final Year, hospice, jim downey, John Bourke, Kindle, marketing, promotion, Science Fiction
Tuesday is April 1, the day when I tend to ignore just about everything said/reported online.
But here’s something that’s legit: Both Communion of Dreams and Her Final Year will be free to download. And just in case you’re like me and tend not to trust *any* special offers on that day, they’ll both also be free to download the next day, as well. And remember, you don’t need to own an actual Kindle — there are free emulators for just about every reader/mobile device/computer.
You’re no fool. Don’t be parted from your money. Get a free copy of the Kindle edition of either or both books.
Jim Downey
Filed under: Alzheimer's, Bipolar, Connections, Failure, Feedback, Health, Hospice, NPR, Preparedness, Science, Society, Writing stuff | Tags: All Things Considered, Alzheimer's, bipolar, blogging, Dark Playground, health, hospice, humor, jim downey, Morning Edition, NPR, predictions, procrastination, psychology, scarcity, science, Sendhil Mullainathan, St. Cybi's Well, Tim Wilson, Wait But Why, writing
OK, actually more like four. Maybe. Kinda. Sorta.
You’ll see.
* * *
Interesting item on this morning’s Morning Edition, looking at a new book about how scarcity has a psychological impact which pushes people to make poor choices. The transcript isn’t up yet, so here’s just one passage from the interview with co-author Sendhil Mullainathan:
When you have scarcity and it creates a scarcity mindset, it leads you to take certain behaviors which in the short term help you manage scarcity, but in the long term only make matters worse.
Specifically, it’s a coping strategy: by setting aside some long-term problem, you actually have more time to deal with urgent short-term problems. This is a very normal human reaction, and actually even makes evolutionary sense — not getting eaten today is more important than where that glacier up the mountain will be next year.
I still remember a poster my Resident Advisor had up on her wall in college, which distilled this problem nicely. It said (with appropriate humorous graphic): “When you’re up to your ass in alligators, it’s easy to forget that you came here to drain the swamp.”
* * *
I’ve … struggled … with procrastination all my life. Sometimes more successfully than at other times. It can manifest as lethargy. Or writer’s block. Or simple distraction.
And I learned a long, long time ago that that struggle was made worse when I was confronted with other stressors in my life. A bad bipolar cycle. Financial stress. Emotional stress. Simple lack of sufficient sleep. Just look back through my blog posts while we were doing care-giving for Martha Sr, and you’ll see exactly what I mean.
So when I see someone come up with an interesting take on procrastination, I pay attention. Here’s a very good one:
In the monkey world, he’s got it all figured out—if you eat when you’re hungry, sleep when you’re tired, and don’t do anything difficult, you’re a pretty successful monkey. The problem for the procrastinator is that he happens to live in the human world, making the Instant Gratification Monkey a highly unqualified navigator. Meanwhile, the Rational Decision-Maker, who was trained to make rational decisions, not to deal with competition over the controls, doesn’t know how to put up an effective fight—he just feels worse and worse about himself the more he fails and the more the suffering procrastinator whose head he’s in berates him.
It’s a mess. And with the monkey in charge, the procrastinator finds himself spending a lot of time in a place called the Dark Playground.*
The Dark Playground is a place every procrastinator knows well. It’s a place where leisure activities happen at times when leisure activities are not supposed to be happening. The fun you have in the Dark Playground isn’t actually fun because it’s completely unearned and the air is filled with guilt, anxiety, self-hatred, and dread. Sometimes the Rational Decision-Maker puts his foot down and refuses to let you waste time doing normal leisure things, and since the Instant Gratification Monkey sure as hell isn’t gonna let you work, you find yourself in a bizarre purgatory of weird activities where everyone loses.**
* * *
There was a great story yesterday afternoon on All Things Considered, about a little boy who was terrified by a statue of Frankenstein(‘s Monster). It was funny, charming, and insightful.
What insight? This one:
“Well, your nephew is a brilliant story editor,'” says psychologist Tim Wilson of the University of Virginia.
Wilson has been studying how small changes in a person’s own stories and memories can help with emotional health. He calls the process “story editing.” And he says that small tweaks in the interpretation of life events can reap huge benefits.
This process is essentially what happens during months, or years, of therapy. But Wilson has discovered ways you can change your story in only about 45 minutes.
* * *
There’s a second part to that item about procrastination I posted above (hence my ambivalence about whether this blog entry was about three things or four):
There’s only one way to truly beat procrastination:
You need to prove to yourself that you can do it. You need to show yourself you can do it, not tell yourself. Things will change when you show yourself that they can. Until then, you won’t believe it, and nothing will change. Think of yourself like a basketball player on a cold streak. For basketball players, it’s all about confidence, and an ice cold shooter can tell himself 1000 times, “I’m a great shooter, I’m going to hit this next one,” but it’s not until he physically hits a shot that his confidence goes up and his touch comes back. So how do you start hitting shots?
* * *
3) Aim for slow, steady progress—Storylines are rewritten one page at a time.In the same way a great achievement happens unglorious brick by unglorious brick, a deeply-engrained habit like procrastination doesn’t change all at once, it changes one modest improvement at a time. Remember, this is all about showing yourself you can do it, so the key isn’t to be perfect, but to simply improve. The author who writes one page a day has written a book after a year. The procrastinator who gets slightly better every week is a totally changed person a year later.So don’t think about going from A to Z—just start with A to B. Change the Storyline from “I procrastinate on every hard task I do” to “Once a week, I do a hard task without procrastinating.” If you can do that, you’ve started a trend. I’m still a wretched procrastinator, but I’m definitely better than I was last year, so I feel hopeful about the future.
* * *
Wait — I said three things? Or maybe four?
I suppose it’s really only one, after all.
Time for me to get back to work.
Jim Downey
Filed under: Alzheimer's, Amazon, Arthur C. Clarke, Connections, Feedback, Health, Hospice, Humor, Kindle, Marketing, Promotion, Publishing, Science Fiction, Writing stuff | Tags: Alzheimer's, Amazon, blogging, care-giving, direct publishing, feedback, free, health, hospice, humor, jim downey, John Bourke, Kindle, literature, promotion, reviews, Science Fiction, St. Cybi's Well, writing
Couple new reviews on Amazon I thought I would share. The first is of Her Final Year, and here it is:
I found this to be a helpful account of what to expect as parents age. The two men in the account were truly devoted attendants and I was impressed by them.
The second is for Communion of Dreams, and is rather lengthy. But here’s a bit of it:
I enjoyed this book from start to finish. It was my “recovering from Christmas insanity this weekend” selection on my kindle and it was just perfect for the purpose! I started Saturday and read until I was bleary eyed and finished Sunday.
* * *
I very much loved the weaving of deep lines of spirituality throughout the story and how integral it was to the story from beginning to end. Unlike several books I’ve read that attempted this, Communion of Dreams actually succeeds in making you WONDER! Mr. Downey’s writing definitely favors Clarke and evokes the same beautiful but disturbing feelings that 2001: A Space Odyssey.
Well, gee … 😉
Like I said, it’s a fairly lengthy review, and not all gushing. Check it out when you get a chance.
Work continues apace on St. Cybi’s Well. I’m starting to get feedback from several “alpha readers” on the first batch of chapters, and so far I’m pleased with the overall response. Which isn’t to say that it is all praise; that wouldn’t be of any help to me at all. As I’ve noted before, if you check my FB page, I often will post small passages from the working text there.
Jim Downey
Filed under: Alzheimer's, Amazon, Bad Astronomy, Feedback, Health, Hospice, Humor, Kindle, Marketing, Phil Plait, Promotion, Publishing, Science Fiction, Slate, YouTube | Tags: Alzheimer's, Amazon, Australia, Bad Astronomy, blogging, Brazil, care-giving, Communion of Dreams, direct publishing, free, health, hospice, humor, Japan, jim downey, John Bourke, Kindle, literature, memoir, optical illusion, pareidolia, Phil Plait, promotion, Science Fiction, Slate, video, www youtube
Via Phil Plait, another wonderful illusion:
Plait has the full explanation (and a number of other links worth checking out), but here’s the critical part:
The key to this whole thing is the way your brain sees perspective, specifically convex and concave shapes, coupled with its uncanny ability to pick a face out of patterns (called pareidolia). Your brain wants to interpret the dragon as a face, and faces are convex: The sides of the face curve away from you (when you look at someone’s face, their nose is closer to you than their ears).
Definitely worth checking out!
Quick note about the promo results: 175 copies of Communion of Dreams were downloaded, including first-time downloads in Japan and Brazil! Her Final Year had a total of 63 downloads, and before the promo started someone in Australia bought a copy. I should be used to this by now, but I still really get a kick out of the fact that people around the world are reading both books.
Thanks, everyone!
Jim Downey
Filed under: Alzheimer's, Amazon, Art, Augmented Reality, Brave New World, Connections, Feedback, Kindle, Marketing, NPR, Predictions, Promotion, Publishing, Science, Science Fiction, tech | Tags: art, augmented reality, AWARE camera program, blogging, care-giving, Communion of Dreams, David Brady, direct publishing, feedback, free, GigaPan, gigapixel, hospice, jim downey, John Bourke, Kindle, NPR, photography, promotion, science, Science Fiction, technology
This is a really cool application of imaging technology: a massed ball of high-quality digital cameras which can capture a gigapixel panorama in one instant. And the neat thing is that one of the main people behind this understands that while he can imagine some uses for such a camera system, there will come applications which he cannot now envision. From the NPR story:
His team has photographed Duke University football games, for example, that let you zoom in and see the ball in the air, plus the faces of all the players in the field, and the faces of all the fans in the stands.
“I can’t imagine … how people are going to use these things,” Brady says, “and, of course, since I’m an instrument builder, that’s the real interest. Because I’m sure photographers will use it in ways that I haven’t even thought of.”
Nice to see that awareness of shifting reality.
And a quick reminder of another kind of awareness: Communion of Dreams and Her Final Year are both available for free download today and tomorrow.
Jim Downey

