Filed under: Alzheimer's, Bipolar, Depression, Health, Hospice, Marketing, Promotion, Publishing, Writing stuff
Cross posted from the Her Final Year blog. For those who are new to my blog, much of the material in the memoir was stuff I wrote here, first, as we were going through the experience of being care-providers for my Mother-in-law. It is *intensely* honest and personal, but that gives it power – showing others what it is like to be a care-giver through the good times and the bad. Many people have found it to be very helpful.
JD
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Well, last Sunday’s free Kindle edition promotion was very successful – we had over 400 downloads, from the US, the UK, and even Italy! If you were one of the people who downloaded the book, we hope you are finding it useful in understanding how we went through the arc of being care providers.
The response was so good that we’re going to do it again this coming Sunday. Yup, anyone will be able to download the Kindle edition of Her Final Year for free. You don’t need a special code. You don’t need to enter any kind of drawing. You don’t even need a Kindle – there is a free Kindle emulator/app for almost all computers/tablets/mobile devices. Just go to the Kindle page for the book, and “buy” it for $0.00.
Please help spread the word – tell friends and family members. Post the info to your Twitter or Facebook accounts. Share it with forums for care-givers. We want to get this book widely disseminated so that it can do more good.
Thank you – it has been very rewarding to hear back from those who have found the book valuable either as care-providers or for understanding what care-providers they know are going through.
Jim Downey
Filed under: Alzheimer's, Amazon, Health, Hospice, Kindle, Promotion, Publishing, Science Fiction
Just wanted to pass along some nuts & bolts stuff.
First, the Kindle promotion yesterday for Her Final Year was quite successful. Total, we had 409 downloads of the memoir, and that breaks down to 385 in the US, 23 in the UK, and one in Italy. Not bad at all – and thanks to all those who were kind enough to help spread the word.
If you missed your chance to download the book for free yesterday, never fear: we’re going to repeat the promotion this coming Sunday!
And here’s a bit of news: I’m going to offer a promotion for a free download of the Kindle edition of Communion of Dreams the weekend of March 31/April 1. And in conjunction with that, I will also have a small contest/drawing for a signed copy of the paperback – watch for details!
Lastly, I want to note another excellent review of Communion of Dreams now up on Amazon. Here’s an excerpt:
As an SF devotee since the 1950’s, I’ve read the best and the worst in the genre. Communion of Dreams definitely ranks among the best. Combining believeable “hard” science with a profound humanism, the story and the characters — especially Seth — engaged me fully from start to finish.
Check out the whole thing.
More later. Probably. I didn’t get a lot of sleep last night due to raccoon-chewing-on-the-house problems. So we’ll see.
Jim Downey
Filed under: Alzheimer's, Amazon, Health, Kindle, Promotion, Publishing, Society
Cross-posted from the Her Final Year blog.
JD
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OK, our first Kindle promotional day is here! That means that *anyone* can download the Kindle edition of Her Final Year for free. You don’t need a special code. You don’t need to enter any kind of drawing. You don’t even need a Kindle – there is a free Kindle emulator/app for almost all computers/tablets/mobile devices. Just go to the Kindle page for the book, and “buy” it for $0.00. Then it is yours to read, or loan, or ignore.
But don’t ignore this opportunity – we’ve already had over 100 downloads in the US, and another dozen in the UK. Be sure to get your copy, and to tell any friends or forums who may need this kind of information/support about the promotion!
Thanks, everyone!
Jim Downey
I’ve said before that there is some kind of environmental effect behind the rising obesity rates worldwide over the last several decades. It could be a virus. It could be change in our gut flora. It could just be a response to rising stress levels in our society. It could be some kind of leeching plastics, or the use of HFC, or any number of other factors individually or in combination.
Or, perhaps it is the air we breathe:
Could Air Pollution Be Making Us Fat?
Steadily rising levels of carbon dioxide in the atmosphere may be affecting brain chemistry, increasing appetite and contributing to the obesity epidemic, according to a new hypothesis, which still awaits rigorous testing and inevitable debate.
The idea proposes that breathing in extra CO2 makes blood more acidic, which in turn causes neurons that regulate appetite, sleep and metabolism to fire more frequently. As a result, we might be eating more, sleeping less and gaining more weight, partly as a result of the air we breathe.
Major studies are in the works to test the hypothesis, which is still very much in the what-if stage. But if the link pans out, the research would offer yet another reason to reduce the CO2 we produce, while also potentially inspiring new obesity treatments.
OK, as the article stresses, this is *not* proven yet. But there is enough preliminary data and a plausible mechanism to warrant some serious investigation. And it tracks well with the rapid spread of obesity rates – CO2 levels have about doubled in the last 50 years.
Still, I’d rather have to fight fat than Reavers.
Jim Downey
*http://firefly.wikia.com/wiki/G-23_Paxilon_Hydrochlorate
Filed under: Alzheimer's, Ballistics, Failure, Guns, Health, Marketing, Predictions, Promotion, Publishing, Science Fiction, Writing stuff
. . . looking over my New Years post last January is just mostly painful. Because 2011, while it had some good things about it, was mostly just painful. Literally. In many regards, I’d just as soon forget the bulk of it.
But this look-back is something of a tradition, so let’s get it out of the way.
Total downloads of Communion of Dreams dropped off a fair bit in 2011, with just an additional 5,444 versions of the book zipping across the aether. I have long since lost track of the exact number of downloads that makes, but it’s something in excess of 35,000. Yay.
What also dropped off was my focus on the book, as I waited for The Publisher Who Shall Not Be Named to return any of my emails or calls, and turned my attention to other projects. Like getting Her Final Year published. And doing the big BBTI tests and site revamp. And doing a bunch of writing for Guns.com. So it’s not too surprising that interest in CoD waned a bit.
So, not a great year, particularly since most of my other projects didn’t work out like either I hoped or predicted. Still, I stubbornly refuse to learn from my failures, and hope to have a self-published version of Communion of Dreams available “soon.” Maybe even “real soon.” We’ll see.
Meanwhile, let’s all work to make 2012 a better year. Deal?
Jim Downey
A good friend posted this to her Facebook status:
“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”
Recognize that? It’s from Steve Jobs.
Now, I’m not a Jobs fanboy. I’m not that big into Apple products. But at least in this regard, I think that Jobs had the right perspective. Your time here is limited. You are going to die. We all die. Live your life on your terms insofar as possible.
Jobs, by all reports, tried to hang onto life with all of the resources available to a billionaire, including a liver transplant and experimental treatments. I hope that he found the quality of life he had in the last years of his life satisfactory, on his terms.
Not a choice I would make. Nor, it seems, would it be the choice for most doctors:
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.
It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.
The whole article is worth reading.
I don’t mean to be morbid, here at the end of the year. Usually, this is a time set aside for celebration – either for celebrating a good year past, or celebrating the hope of the new year to come. So talking about death may be a bit ‘of a downer’, to use a phrase more popular when I was a young man. But I think it is important to be honest with ourselves that our time is limited, and we should make the most of it on our own terms.
Happy New Year.
Jim Downey
Filed under: Art, Depression, Failure, General Musings, Health, Migraine, Predictions, Survival
“So, how’re you doing?”
It’s the sort of question which comes after all the preliminary stuff, all the catching-up with an old friend who I haven’t seen in a couple of years. Your best friends are like that: able to ask the same question that everyone asks, but have it mean something more.
* * * * * * *
This morning I woke up, not hurting.
This was unexpected. Yesterday had been a long day, and I hurt a lot. The source of the pain was just a minor case of post-nasal drip. No, that didn’t hurt. But it caused me to do a fair amount of coughing. That’s what hurt. Yeah, because of the torn intercostal muscle high on my right side, which feels like a broken rib. The one I’ve had for about 16 months now.
So I expected to hurt. In fact, most of the time I expect to hurt.
Chronic pain is different than short-term pain. Oh, I’ve broken plenty of bones, and know what it means to *really* hurt for days, and then to ache for weeks. For a couple of decades now I’ve had a knee which can cause an immense amount of pain if I subject it to the wrong kind of use, and that pain will remain intense for a week or so. Pain is no stranger in my life. Never has been.
But chronic pain, that’s different, as I’ve come to learn. It almost takes on a physical weight, which you have to carry around. That wears you out, sometimes sooner in the day, sometimes later. It functions like a restraint you have to strain against to accomplish anything. It’s like having a migraine – a full fledged, nausea-inducing, sparkly lights & mild vertigo migraine – and still having to drive over an icy road into the sun.
* * * * * * *
My garden still hasn’t been put to bed for the year. Yeah, it’s really late.
It’s just one manifestation of how this year has gone. Everything has taken longer than I expected, cost more than I thought it would, and didn’t work out quite the way I hoped it to.
Partly this is due to the chronic pain. Partly it is due to mistakes on my part. Partly it is just because of chance. By turns this has made me depressed, disappointed, disgusted. Sometimes even on the brink of despair.
And yet…
* * * * * * *
“So, how’re you doing?”
It’s the sort of question which comes after all the preliminary stuff, all the catching-up with an old friend who I haven’t seen in a couple of years. Your best friends are like that: able to ask the same question that everyone asks, but have it mean something more. I am fortunate enough to have several such close friends.
“It’s been a long year. And not a good one.” I looked at my friend. She nodded. “But I’ve had worse. And I’ve had an idea about a new story I want to tell…”
Jim Downey
The clouds of morning brought rain and grey, dulling the view out the bus windows as we headed south.
But that turned out to be the least of our troubles…
* * * * * * *
So, we got up, had breakfast, lugged our bags down to the bus. The idea was that we would drive south to Wellington, New Zealand’s capital city, with stops at several points along the way to do some sight-seeing. This in particular was to include Lake Taupo and the surrounding area, including the Huka Falls, then on to a luxurious lunch at a winery before rolling into Wellington late afternoon.
That was the theory.
Things started going wrong when we discovered that we were one person short on the bus. A quick check found that one member of the group, an elderly woman who was a friend and supporter of the choir, was still in her room. She had gone off with family in Rotorua after the concert the day before, so had missed the discussion we’d had about plans for this morning. But she was also not feeling well, and was showing signs of confusion as they got her settled on the bus.
* * * * * * *
We were running a bit late due to the aforementioned delay and then the condition of the roads as we wound through the mountains of the central north island. Helen, our guide, tried to interest the choir and get everyone to relax with a series of CDs of local music played over the bus’s sound system. This included a bunch of what she characterized as “older folk-music” (stuff from the 1950s). Here’s how I characterized it on facebook:
…we’re talking about the Kiwi version of “Battle of New Orleans” and similar faux-Western or hillbilly stuff.
The horror, the horror . . .
I put in ear plugs. Then my noise-canceling headphones. Then I started wondering how hard it would be to break into the bus that evening and disable the sound system.
* * * * * * *
We stopped at Huka Falls. It was gorgeous:
and
* * * * * * *
After a stop at the nearby gift shop for snacks and postcards, we all started to pile back onto the bus.
But the elderly woman I mentioned earlier was feeling a little shaky, needed help walking back to the bus. Ron, one of the choristers, who is also a ICU nurse (and the choir’s unofficial medic when they tour), got her settled in her seat and then did an assessment of her vitals. He consulted with another chorister who is a medical professional. Together, they decided that the woman needed urgent medical attention.
We headed into the nearby town of Taupo, where there was a hospital.
* * * * * * *
It was a good decision, and probably saved the woman’s life. It turned out that she had pneumonia – a significant danger for anyone who is elderly.
We spent about 90 minutes at the hospital, as she was checked out and her condition determined. As noted, she had family who were in Rotorua, but my friend ML was tapped to stay with her until they were contacted and able to come see to the woman’s care. Why her? She’s smart, a lawyer, has a great deal of experience traveling and dealing with legal systems around the world, and wasn’t a chorister – meaning that she could miss part of the tour if necessary, and not hurt the make-up of the choir. She’s also stubborn enough to stand up to any bureaucratic problems which might occur, not to mention dealing with a cantankerous elderly woman who was more than a little certain that she didn’t need such medical fuss.
We got back on the road. Helen had contacted the winery where we had been scheduled to lunch, let them know we had a medical emergency which had messed up our plans. Once we were out of town she contacted them again, and sorted out rescheduling.
* * * * * * *
The bad news was that the rehearsal which had been scheduled for that evening with the Wellington male Voice Choir had to be canceled, because we were going to run too late to be able to use the reserved space.
The good news was that the weather cleared, and we’d be able to have a relaxed, but late, lunch after all. It wasn’t necessary to try and get through quickly.
The good news for most, that is. For Martha and I, it also meant we had to cancel our evening plans to get together with another person involved in the shooting sports, as well as her family and some friends from Wales. A shame.
* * * * * * *
We had lunch at the Mission Estate Winery in the Hawkes Bay area. It was delicious, both in terms of the quality of the food & wine, as well as in terms of the location & view.
Afterward, the choir gathered down the hill from the site of the winery, at a natural amphitheater which has been the location of many famous concerts. On this occasion the only audience were those of us traveling with them. Well, and a field of sheep.
I think we all enjoyed it. I did. The sheep seemed to. Hard to say.
* * * * * * *
We had given Martha’s phone to ML – our texting plan allowed us easy communication between the two phones, even overseas. She let us know that the family of the elderly woman had arrived and taken over seeing to her needs. She was going to require hospital care for at least several days. ML would catch the next flight to Wellington, and beat us there.
I almost envied her, not having to listen to more folk music.
* * * * * * *
We rolled into Wellington that evening. Our hotel was the Rydges Wellington – a very nice accommodation right downtown.
We dropped our bags off, then met ML in the lobby to go to dinner. Because she had gotten in earlier, she’d had a chance to scope things out in the area, and recommended a nice Dutch-inspired pub (there is a significant Dutch component to New Zealand’s history) just down the street. Some light dinner and a couple of good local ales helped my mood considerably.
Jim Downey
Was captivated by this story on TAM this weekend, was delighted to see that someone had done a short video of it:
Nice adaptation.
Jim Downey
There was an item making the rounds last week that I found pretty interesting. It was about the phenomenon of ‘decision fatigue’ where the process of exercising willpower to make decisions wears you out, and after a certain point you start making bad decisions until you take a break and give your brain a chance to recharge with rest, food, and a change of pace. You can find the full article here, and here is a good passage which sums up the research:
Decision fatigue helps explain why ordinarily sensible people get angry at colleagues and families, splurge on clothes, buy junk food at the supermarket and can’t resist the dealer’s offer to rustproof their new car. No matter how rational and high-minded you try to be, you can’t make decision after decision without paying a biological price. It’s different from ordinary physical fatigue — you’re not consciously aware of being tired — but you’re low on mental energy. The more choices you make throughout the day, the harder each one becomes for your brain, and eventually it looks for shortcuts, usually in either of two very different ways. One shortcut is to become reckless: to act impulsively instead of expending the energy to first think through the consequences. (Sure, tweet that photo! What could go wrong?) The other shortcut is the ultimate energy saver: do nothing. Instead of agonizing over decisions, avoid any choice. Ducking a decision often creates bigger problems in the long run, but for the moment, it eases the mental strain.
I think we’ve all probably experienced some form of this, and the long article goes into plenty of examples such as shopping, making the ‘decision’ to resist temptation (whether food or leisure or sex), having to go through and make judgments about difficult matters of fact, and so forth. I know that it is one of the reasons why I found editing Her Final Year so damned exhausting – fine distinctions between word choices and phrasing combined with the emotional content of the material meant that I could only effectively work on the book for 45 minutes or an hour a day.
And I think that there’s a connection to Alzheimer’s that this research clearly explains: the phenomenon of “sundowning“. Here’s a passage from Her Final Year, from an entry of mine titled “When does this plane land?” originally written 9/3/07:
There’s a phenomenon familiar to those who deal with Alzheimer’s. It’s called “sundowning”. There are a lot of theories about why it happens, my own pet one is that someone with this disease works damned hard all day long to try and make sense of the world around them (which is scrambled to their perceptions and understanding), and by late in the afternoon or early evening, they’re just worn out. You know how you feel at the end of a long day at work? Same thing.
And interestingly, that passage comes from the chapter October: Hospice or placement? which deals with the incredibly difficult decision of what to do with a loved one when you’ve reached a crisis point. A decision that any care-provider has to make in the face of years of exhaustion. A decision which they will probably second-guess for the rest of their lives.
Jim Downey
(Cross posted from the Her Final Year blog.)
Communion Of Dreams 