Filed under: Alzheimer's, Amazon, Feedback, Hospice, Kindle, Marketing, Promotion, Publishing, Science Fiction, Society | Tags: Alzheimer's, Amazon, blogging, care-giving, Communion of Dreams, dementia, direct publishing, feedback, free, Her Final Year, hospice, jim downey, John Bourke, Kindle, memoir, promotion, reviews, Science Fiction, thanks
There are a couple of new reviews up on Amazon which I’d like to share. The first is for Her Final Year:
A story worthy of five stars but I found it kind of difficult to keep straight, which family and patient they were talking about. The author did a good job of writing about the difficulties faced by the family caregivers. I hand it to them for staying with a very difficult task for a very long time.
The second is for Communion of Dreams:
James Downey has created a novel that compares favorably with the old masters of science fiction.Our universe would be a better place were it more like the one he has imagined and written about so eloquently.Thank, sir, you for this wonderful escape from reality.
To show that appreciation, this coming week both books will be available for free download, but at two different times. The Kindle edition of Her Final Year will be free Monday through Wednesday, and the Kindle edition of Communion of Dreams will be free Thursday and Friday.
Filed under: Alzheimer's, Amazon, Connections, Health, Hospice, Kindle, Marketing, Promotion | Tags: Alzheimer's, blogging, care-giving, dementia, direct publishing, Ether One, free, game, health, Her Final Year, hospice, jim downey, John Bourke, Kindle, memoir, Michael Thomsen, promotion, The New Yorker
OK, a bit flip, there. Sorry. This actually sounds like a really interesting game, and the people who are involved with it seem to understand about the limitations inherent in it:
Ether One, a first-person puzzle game made by a six-person team at White Paper Games, in Manchester, England, is about the slow dissolution of the brain. The game casts the player as an employee of a futuristic memory-retrieval company called the Ether Institute of Telepathic Medicine. Your job is to dive into the mind of Jean Thompson, a sixty-nine-year-old woman diagnosed with dementia, and retrieve a series of lost memories. Using scans of the woman’s brain, the Ether Institute reconstructs 3-D simulations of what remains of her memory. Players must reassemble the story of her life using the oddly alien artifacts (the symbolic significance and basic operation of which remain a mystery) left behind in the fraying simulation of her past home and work places.
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Ether One is built around a central control room from which players access the four main areas of Jean’s past—a seaside town in England, an industrial mine, a processing factory, and a lighthouse overlooking the ocean. Each area is filled with hundreds of tchotchkes, mementos, and mundanities that could hold some long-forgotten significance. Players are asked to “collect” the memories and are limited to carrying only one object at a time. At any point in the gameplay, they can instantaneously teleport back to the control room, which is lined with empty shelves to hold anything they collect. As a player, you’re never sure what’s important and what isn’t, so the system encourages you to take everything.
This hoarding is repaid with periodic puzzles, such as a door with a numeric lock whose code can be found on the bottom of a previously collected mug. As the game progresses, these puzzles increase in complexity, as does the array of random objects filling the shelves. The collection gradually overwhelms the player’s ability to remember just where all of these things came from and why they seemed important enough to retrieve. Why did I bring this plate all the way back here? Whose hat is this supposed to be again? It’s a tidy simulation of the cognitive degradation of dementia.
The author of the piece, Michael Thomsen, has first-hand experience with a family member who suffered with dementia. Here’s his concluding insight about Ether One:
Playing Ether One, I can’t say I felt any new illuminations about the disease. Most of the things I watched my grandmother go through were missing in its simulation, but I was reminded of the helplessness I felt. After solving the first few puzzles in Ether One, I realized that I’d been storing way too many items back in the hub world. It reminded me of my grandmother’s stuffed bookshelves in her nursing home room—old books, half-used perfume bottles, porcelain ferrets, a piece of Bohemian glass I’d given her once—we’d kept as much as we could when she moved in, trying to guess what might mean something to her and what might be lost for good. If video games indulge in a fantasy of objects—swords, spaceships, and the like—it’s one that’s hard to translate into a room filled with forgotten things. In Ether One, I found that the distance between these seemingly incompatible worlds lessened just a little. Even though I couldn’t quite forget myself inside its artifice, it was comforting to have the space to try.
May be worth checking out.
Filed under: Amazon, Apollo program, Buzz Aldrin, Connections, Feedback, Health, Humor, ISS, Kindle, Man Conquers Space, Marketing, NASA, Neil Armstrong, Promotion, Publishing, Science, Science Fiction, Space, Writing stuff | Tags: Alzheimer's, Amazon, Apollo, Apollo 11, blogging, Buzz Aldrin, Buzzfeed, care-giving, Chris Hadfield, direct publishing, free, health, Her Final Year, hospice, humor, jim downey, John Bourke, Kindle, Michael Collins, Moon, NASA, Neil Armstrong, promotion, science, Science Fiction, space, St. Cybi's Well, writing
And you can pee upside down, which I did, just for fun. Wouldn’t you?
Great little list about the reality of spaceflight at this point in time. Perfect perspective for this weekend, since he manages to capture and convey the wonder and excitement so many of us felt from the Apollo era. It’s so easy to lose your vision, your enthusiasm, in the grim plodding of day-to-day life.
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Thanks to all who helped make the recent anniversary promotion of Her Final Year a success! Worldwide there were about 150 downloads – not a huge number, but it is progress. I hope the book can help those who downloaded it.
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Progress continues on St Cybi’s Well. Hope to wrap up Chapter 9 in the next couple of days.
Filed under: Alzheimer's, Amazon, Health, Kindle, Marketing, Promotion, Publishing, tech | Tags: Alzheimer's, Amazon, blogging, care-giving, dementia, direct publishing, free, health, Her Final Year, hospice, jim downey, John Bourke, Kindle, promotion, technology
Today’s the last day to snag a free copy of the Kindle edition of Her Final Year! Remember, you don’t need an actual Kindle to take advantage of this — Amazon has a free Kindle emulator/app for just about any phone, tablet, laptop, or computer out there, and it will sync up with your Amazon account so you can read the same book across many different platforms without any trouble whatsoever. You can find full information there on the page for Her Final Year.
So, get it. Read it. Share it.
Filed under: Alzheimer's, Argentina, Ballistics, Bipolar, Book Conservation, Connections, Depression, Failure, Gardening, General Musings, Guns, Health, Italy, New Zealand, Patagonia, Science Fiction, Society, Survival, Travel, Wales, Writing stuff | Tags: Alwyn, Alzheimer's, Argentina, bipolar, blogging, book conservation, bookbinding, care-giving, Communion of Dreams, depression, direct publishing, feedback, gardening, guns, Habaneros, health, Her Final Year, hospice, Italy, jim downey, John Bourke, Legacy Bookbindery, literature, New Zealand, Patagonia, Science Fiction, St. Cybi's Well, travel, Wales, writing
This will probably come across as a little brag-y. Sorry about that. Not my intention.
The other day I got a phone call. For Legacy Art. The gallery we closed May 31, 2004. Yeah, more than ten years ago.
And after I got through abusing the telemarketer over this point, I got to thinking about the many changes in the last decade.
First thing I should say up front: I’m at a low point in my bipolar cycle, as I’ve noted recently. That means that my self-image isn’t all that great. This isn’t a debilitating depressive episode or anything — I’ve managed to continue to work steadily, as well as enjoy the usual aspects of life. So not horrid. But it is sometimes difficult to not focus on the things which haven’t gone well, and my own failings which are often a component of that. And one of those failings is a sense of not accomplishing much, of being lazy, of wasting my time and the time of others.
Anyway. I got to thinking about the changes in the last decade. And surprisingly, more positive things came to mind than negative ones. That fed on itself, and I found myself making a mental list of the accomplishments.
In no particular order or ranking: wrote two books (one of them as co-author). Most of the way done with another. Visited Wales. And Argentina. And New Zealand. And Italy. Wrote several thousand blog posts. Became something of an authority on small caliber ballistics. Wrote several hundred articles and columns for publication. Was the full-time caregiver for someone with Alzheimer’s. Have done conservation work on something more than a thousand (that’s just a guess … may be closer to two thousand) books and documents. Made some great hot sauces. Raised, loved, and then said farewell to a great dog. Tried to be a good friend, and husband. Tried to help others when I could.
We all fail. We all have things we’ve done that haunt us in one way or another. Sometimes, those fears and demons overwhelm. Me, at least.
I may or may not be at a turning point in my bipolar cycle. But I’m glad that at least I can think of things I have accomplished. That helps.
Back to work on St. Cybi’s Well.
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.