Filed under: Alzheimer's, Book Conservation, Civil Rights, Connections, Constitution, Emergency, General Musings, George Orwell, Government, Heinlein, Paleo-Future, Politics, Predictions, Preparedness, Robert A. Heinlein, Science Fiction, Society, Survival, Violence, Writing stuff | Tags: 1984, Alzheimer's, America, blogging, care-giving, civil liberties, Civil War, civilization, Communion of Dreams, Crazy Years, dementia, Donald Trump, election, Heinlein, Her Final Year, Hilary Clinton, jim downey, luck, Nazi, NPR, politics, predictions, Robert A. Heinlein, Science Fiction, St. Cybi's Well, survival, technology, theocracy, Wikipedia, writing
The eighty-something man fumbled with the pocket knife he had carried his whole life. His hands trembled with age, rage, and fear, but if the hulking stranger refused to leave his house, well, then by God he’d force the man to leave!
The stranger easily took away the knife, and told the man to go back upstairs. Then he sat down on the mechanic’s stool next to his motorcycle and began to weep.
I was about 14, and had just witnessed age-related dementia for the first time.
The hulking stranger was my uncle, whom I had come to live with. The elderly man was his grandfather. We were at his grandparent’s home, using the garage under the house as a warm place to get a little work done on his bike. He and his grandparents were close, always had been. He had lived with them for a while when he was young.
* * *
President Trump is certain that he was cheated out of a popular election mandate due to voter fraud. Almost no one else agrees, and even members of his own party who are responsible for elections at the state and local level have said that there is virtually no evidence of actual fraud.
The President has also claimed that his inauguration had more people in attendance and watching around the world than any previous. The best evidence and estimates available from multiple sources do not support this claim.
I could go on.
* * *
I remember Martha Sr getting fixated on things which were weird, unpredictable. Fixated in such a way that no matter what we tried to say or do, she was certain that we were wrong. Or just lying to her. Or something.
It was almost always some strange idea or memory or object which would catch her attention seemingly out of the blue and often at the most inconvenient times. The idea that the strawberry seeds in her yogurt were necessary for completing a crossword puzzle, so she had to pick them out and keep them. Or that she was going on a train trip, and had to make sure to go get her tickets right now. It drove us completely nuts, and was one of the more difficult challenges of being care-givers. We’d try to distract her with other things, or explain that we already had her tickets and she didn’t need to worry. Sometimes that worked. Sometimes she’d go on and on and on about whatever it was which had captured her attention, returning to it for days on end.
* * *
In the aftermath of the presidential election, many people who had supported Secretary Clinton were shocked, stunned, at the outcome.
Some started looking for ways to challenge the results. First there was an effort to get the Electoral College to not affirm Donald Trump as the winner, on the basis that Russia had influenced the election. Then there was a hope that the House of Representatives would not confirm the results of the Electoral College vote. Then there were challenges made to whether President Trump could hold the office, since he was in violation of the Constitution.
I could go on.
* * *
It seems like the long-respected norms of civic behavior are finally starting to break down. They’ve been stressed for a very long time, like a marriage which has gone badly wrong, but is held together out of fear for what would actually happen if one partner were to confront the other over perceived slights or suspected betrayal.
But now someone has had enough, and said words which cannot be taken back.
The shouting, the screaming, the breaking of china in anger and frustration has begun.
Young children stand in the doorway to the kitchen, tears streaming down their face, unsure what this means or what will happen next.
* * *
Someone punched a neo-Nazi. Plenty of people cheered. It’s hard not to cheer when Nazis get punched.
The day after the inauguration, millions of people marched in protest of the new president and his administration. Plenty of people cheered. It’s hard not to cheer the affirmation of civil rights and political empowerment.
The day after that, a top-level presidential advisor ill-advisedly used the term “alternative facts” when disagreeing about the turnout at the inauguration. Plenty of people jeered at her for doing so. It’s hard not to mock something straight out of 1984.
The day after that saw the start of a number of Executive Orders and memoranda signed by President Trump, putting into motion the changes which he and other members of his party had promised. Plenty of people cheered to see the change they wanted starting. Plenty of people jeered both the spirit and the letter of the changes.
* * *
I’m not saying that President Trump has age-related dementia. Not even the first signs of it. I’m a bookbinder, not a doctor, and am in no way qualified to make such an assessment.
And I’m not saying that the rhetoric and actions from those who oppose the new administration are equivalent to the rhetoric and actions of those who have supported it.
I am saying that things have changed. I think that we are on the precipice of something akin to Heinlein’s “The Crazy Years”. Things have changed so much, and so quickly, that I have had to go back and make substantial revisions to St Cybi’s Well. Because what before was a challenge to the reader’s ‘suspension of disbelief’ has been completely superseded by our reality. It’s not the president who is showing signs of dementia — it’s our society.
And I am saying that when you accept and embrace the use of violence against a political opponent, you open yourself up to the use of violence against you by your political opponents. Because there are always justifications and rationalizations for such use, and human history is filled with the resultant wars civil and decidedly uncivil. Be very careful what you wish for.
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.
* * *
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: 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, 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.
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
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.
Filed under: Alzheimer's, Connections, Health, NPR, Science, Sleep | Tags: Alzheimer's, beta amyloid, dementia, health, jim downey, NPR, science, Shakespeare, sleep
Interesting. They may have found the reason that animals sleep: in order to flush the brain of toxins which build up during waking hours.
And more importantly, this may also be part of the explanation for Alzheimer’s and other age-related dementia. From the NPR article linked above:
The brain-cleaning process has been observed in rats and baboons, but not yet in humans, Nedergaard says. Even so, it could offer a new way of understanding human brain diseases including Alzheimer’s. That’s because one of the waste products removed from the brain during sleep is beta amyloid, the substance that forms sticky plaques associated with the disease.
That’s probably not a coincidence, Nedergaard says. “Isn’t it interesting that Alzheimer’s and all other diseases associated with dementia, they are linked to sleep disorders,” she says.
Researchers who study Alzheimer’s say Nedergaard’s research could help explain a number of recent findings related to sleep. One of these involves how sleep affects levels of beta amyloid, says , a professor of neurology Washington University in St. Louis who wasn’t involved in the study.
Perhaps it is time for a nap …
*With apologies to Mr. Shakespeare.