Quick update to this post: I did finally get payment for the conservation work, and on Wednesday we finished getting my wife moved out of her office. By next Wednesday the bulk of the estate stuff will be gone for the auction, so things will eventually settle out here at home. This is good.
And my wife and I are getting ready to leave for the weekend. All weekend. Just going. Sure, we’ve made arrangements for someone to check in on the pets regularly, but that is all the arrangements we needed to make in order to be gone. Which is rather a substantial change from how my life had been the last five or six years. Wow.
Have a good weekend.
Jim Downey
There are times in your adult life when you just hunker down, get stubborn, and see to the end whatever unpleasantness you are experiencing. The last few weeks have sort of felt that way. Hell, the last few years have *been* that way. And a reasonable argument could be made that my entire life would qualify. It’s like that old paraphrase of the laws of thermodynamics: “You can’t win. You can’t even break even. And they won’t let you quit.”
Anyway, back to the present. I mentioned the beginning of last month that we were engaged in some moving chaos. Well, it’s gotten worse since. We’ve been getting things ready for the auction house to haul stuff away for an auction next month. And my wife is now moving her architecture practice home. This latter had been the long-term plan all along, once Martha Sr was gone, but for various reasons it has become necessary for this to take place now. Meaning more boxes, more moving of furniture, more crowding of space as things are shifted and re-shifted, juggling this and that in such a manner that the three-dimensional puzzle all works out the way it needs to. But at least I’m getting regular exercise.
Oh, that other thing I mentioned in moving chaos, about having just delivered the first big batch of books? Well, I still haven’t been paid for that work. Some kind of screw-up in the business office, people on vacation, yada yada. Which is a problem. Because unlike my private clients, who have to put down a 50% deposit on work, my institutional clients get billed when the work is completed. Meaning that I am effectively out about 4 months of pay (because I first did a batch of work for Special Collections, and then got started on the next round of books for the seminary). If there’s one thing worse than being unemployed, it is working but not getting paid for it. What should be the start of getting back on my feet financially, after years of minimal income due to care-giving, has become an unexpected crunch, thanks to the ineptitude of whoever was responsible for processing my invoice. Thanks, buddy – I owe you one.
*sigh*
Anyway, soon my wife will be out of her office, and the auction house will collect things. Eventually I’ll get paid by my clients. Things will get better. But for now, it’s just a matter of hunkering down, getting through this. As always.
Jim Downey
Filed under: Alzheimer's, Ballistics, Book Conservation, Feedback, Guns, Health, Migraine, Predictions, Promotion, Publishing, Ray Bradbury, Science Fiction, Sleep, Society, Writing stuff
As I have noted, I have been fairly busy of late. And in looking back over the last couple of months, I can see a real change in both my energy level and my ability to focus – it’s no longer the case that I want to nap most of the time. Yeah, I am still going through a detox process, still finding my way back to something akin to normalcy – but there has been a decided improvement. Fewer migraines. More energy. A willingness to take on some additional obligations.
So I had to debate a long time when I was recently contacted by a site wanting to expand their scope and impact. These folks. They were wanting me to do a column every two weeks, more-or-less related to Science Fiction (giving me a lot of latitude to define the scope of the column as I saw fit). They have a lot of good ideas, and seem to have a pretty good handle on where they want to go in the future. And the invitation was a real compliment to me – not only did they say nice things about my writing, but they have a good energy and attitude which is appealing.
But I declined the invitation. Why? Well, to a certain extent it’s like Bradbury says: “You have to know how to accept rejection and reject acceptance.”
I may come to regret this decision. It could possibly have helped my writing career, at least in terms of landing a conventional publishing contract. And I know from writing my newspaper column that the discipline can do good things for me – forcing me to address a specific topic rather than the more general musings I post here and at UTI. But I really do have a lot on my plate right now, and they are all things I want to do well, rather than just get done. Blogging here (which is really quite important to me). Participating at UTI. Crafting this book about being a care provider. Getting the ballistics project website up and running. All the book conservation work waiting for me. Eventually getting to work on St. Cybi’s Well again. And enjoying life. There’s been precious little of that these last few years.
So, I declined. But if you perhaps would be interested in the gig, they have contact info on their homepage.
Jim Downey
Filed under: 2nd Amendment, Alzheimer's, Ballistics, Book Conservation, General Musings, Health, Hospice, Marketing, Predictions, Promotion, Publishing, Sleep, University of Missouri, Writing stuff, YouTube
I took some books back to Special Collections yesterday afternoon. As I was unpacking items, one of the staff members asked how I was doing.
“Pretty well. Been busy.”
She looked at me for a long moment. “You look – rested.”
* * * * * * *
On Wednesday, in response to a friend who asked what I had going on, I sent this email reply:
Need to do some blogging this morning, then get settled into the next batch of books for a client. Print out some invoices. Also need to track down some camera software and get it loaded onto this machine, and finish tweaking things here so I can shift over the last of the data from the old system and send it on its way. Need to work on learning some video editing, and start uploading clips from our ballistics testing project to YouTube. Then I can get going on creating the rest of the content for *that* website. Play with the dog. Should touch base with my collaborator on the Alz book, see where he is on some transcriptions he is working on. And then prep dinner. In other words, mostly routine. Yeah, I lead an odd life.
An odd life, indeed.
But here’s a taste of some of the documentation about the ballistics project that I have been working on:
That’s me wearing the blue flannel overshirt. Man, I’m heavy. I hope video of me now would look better.
* * * * * * *
The chaos continues. Yeah, we’re still in the process of completely re-arranging the house, and of seeing to the distribution of Martha Sr’s things. Looks like there’ll be an estate auction in our future sometime next month. But that’s good – it means that things are moving forward, heading towards some kind of resolution.
As mentioned in passing in the email cited above, I’ve been shifting over to a new computer system I got last week. My old system was starting to lose components, and was becoming increasingly incapable of doing things I need to be able to do. Well, hell, it was 7 years old, and was at least one iteration behind the cutting edge at the time I bought it. Thanks to the help of my good lady wife, this has been a relatively painless transition – though one which has still taken a lot of work and time to see through.
And one more complication, just to keep things interesting: My wife is moving her business practice home. This had been the tentative plan all along, once Martha Sr was gone, and for a variety of reasons it made sense to take this step now. She’ll be able to devote more of her energy to seeing to her mom’s estate, hastening that process. And she’s going to take on the task of shopping my book around agencies and publishers. Now that there have been over 10,000 downloads (actually, over 11,000 and moving towards 12,000), it would seem to be a good time to make a devoted push to getting the thing conventionally published, in spite of the problems in the industry. We’re hoping that she’ll be better able to weather the multiple rejections that it will take, and I’ll have more time and energy for working on the next book (and blogging, and the ballistics project, and – oh, yeah – earning money for a change).
* * * * * * *
She looked at me for a long moment. “You look – rested.”
“Thanks!”
It says something that with all I’ve been doing (as described above has been fairly typical, recently), I look more rested now than I have in years.
Actually, it says a lot.
Jim Downey
I had sent a note to a friend that contained something which I thought may have been of interest to his students. He said thanks in return, and I replied (jokingly): “I live to serve.”
His reply:
Man, we got to break you of that. Is there a 12 step program for former caregivers out there? I kid just a little here ...
Actually, it’s an interesting idea . . .
Jim Downey
(Thanks to Steve, and all my other concerned friends.)
Filed under: Alzheimer's, Genetic Testing, Health, io9, NPR, Predictions, Science, Science Fiction, Sleep, Writing stuff
Some years back a good friend sent me a postcard from Florida with the image of a tri-colored heron’s head (you can see the image from which the card came here). On the card, the heron is looking straight at you, top feathers standing straight up, and above it in bright blue ‘electric’ lettering are the words “Stress? What Stress?”
It’s been tacked to the wall next to my desk here since. And it has been something of a standing joke between my wife and I. When things have gotten bad from time to time, one of us will turn to the other and simply say in a squeaky, high pitched voice “Stress? What Stress?”
* * * * * * *
A month ago I wrote about slowly coming down from the prolonged adrenalin high which was being a full time care provider. Doctors have known for a while that such long term stress was hard on care providers. It’ll drive up blood pressure, screw with your sleep habits, and even compromise your immune system. Now they have started to figure out how that immune system mechanism works. Last night I caught a piece on NPR’s All Things Considered with UCLA professor Rita Effros about her research on this mechanism. What professor Effros said (no transcript yet, so this excerpt is my transcription):
So, in the short term cortisol does a lot of really good things. The problem is, if cortisol stays high in your bloodstream for long periods of time, all those things that got shut down short term stay shut down. For example, your immune system.
…
But let’s say you were taking care of an Alzheimer’s spouse, or a chronically ill child – those kinds of situations are known now to cause chronic, really long-term stress – let’s say years of stress.
…
(These care providers) were found to have a funny thing happening in their white blood cells. A certain part of the cell is called the telomere, which is a kind of a clock which keeps track of how hard the cell has been working. Their telomeres got shorter and shorter, and it has been known for many years that when cells have very short telomeres they don’t function the way they’re supposed to function.
What happens is this: cortisol inhibits the production of telomerase – a protein which helps to lengthen and buffer aging effects. Abstract on the mechanism is here, and it says it succinctly:
BACKGROUND:
Every cell contains a tiny clock called a telomere, which shortens each time the cell divides. Short telomeres are linked to a range of human diseases, including HIV, osteoporosis, heart disease and aging. Previous studies show that an enzyme within the cell, called telomerase, keeps immune cells young by preserving their telomere length and ability to continue dividing.FINDINGS:
UCLA scientists found that the stress hormone cortisol suppresses immune cells’ ability to activate their telomerase. This may explain why the cells of persons under chronic stress have shorter telomeres.IMPACT:
The study reveals how stress makes people more susceptible to illness. The findings also suggest a potential drug target for preventing damage to the immune systems of persons who are under long-term stress, such as caregivers to chronically ill family members, as well as astronauts, soldiers, air traffic controllers and people who drive long daily commutes.
* * * * * * *
io9 picked up on this story, and gave it a nice Science Fiction spin:
Stress runs down the body’s immune system, which is why people with high-stress jobs or events in their lives are vulnerable to illness. Now a researcher at UCLA has discovered the link between emotional stress and physical damage — and she’s going to develop a pill that will allow you to endure stress without the nasty side-effects. And there may also be one good side-effect: Extreme longevity.
It turns out that when you’re under stress, your body releases more of the hormone cortisol, which stimulates that hyper-alert “fight or flight” reflex. While cortisol is good in small doses, over time it erodes the small caps at the end of your chromosomes known as telomeres (the little yellow dots at the end of those blue chromosomes in the picture). Many researchers have long suspected that telomeres would provide a key to longevity because they are quite large in young people and gradually shrink over time as cells divide.
Rita Effros, the researcher who led the UCLA study, believes that she can synthesize a pill that combats stress by putting more telomerase — the substance that builds telomeres — into the body. This would keep those telomeres large, even in the face of large amounts of cortisol. It might also make your body live a lot longer too.
[Spoiler alert!]
Curiously, this clue about telomere length and aging is exactly the mechanism I use in Communion of Dreams to reveal that the character Chu Ling is a clone. Genetic testing reveals that the telomeres in her cells are much shorter than would be expected from a child her age, leading to the understanding that this is due to the fact that she has been cloned.
Ironic, eh? No, no one is going to think that I’m a clone. But I find it curious that the same mechanism which I chose for a major plot point pertaining to the health of the human race in my book is one which has been clearly operating on my own health.
Fascinating.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, Science, Scientific American, Society
The human mind is a remarkable device. Nevertheless, it is not without limits. Recently, a growing body of research has focused on a particular mental limitation, which has to do with our ability to use a mental trait known as executive function. When you focus on a specific task for an extended period of time or choose to eat a salad instead of a piece of cake, you are flexing your executive function muscles. Both thought processes require conscious effort-you have to resist the temptation to let your mind wander or to indulge in the sweet dessert. It turns out, however, that use of executive function—a talent we all rely on throughout the day—draws upon a single resource of limited capacity in the brain. When this resource is exhausted by one activity, our mental capacity may be severely hindered in another, seemingly unrelated activity. (See here and here.)
Imagine, for a moment, that you are facing a very difficult decision about which of two job offers to accept. One position offers good pay and job security, but is pretty mundane, whereas the other job is really interesting and offers reasonable pay, but has questionable job security. Clearly you can go about resolving this dilemma in many ways. Few people, however, would say that your decision should be affected or influenced by whether or not you resisted the urge to eat cookies prior to contemplating the job offers. A decade of psychology research suggests otherwise. Unrelated activities that tax the executive function have important lingering effects, and may disrupt your ability to make such an important decision. In other words, you might choose the wrong job because you didn’t eat a cookie.
* * * * * * *
Almost a year ago I wrote this:
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.
* * * * * * *
We cared for Martha Sr for about four years. Well, we were here helping her for a couple of years prior to that. But the nearly constant care giving lasted for about four, growing in intensity during that time, culminating with nearly six months of actual hospice care.
That was a long time. But my wife and I had each other, and it could have been longer.
That same day, a hospice patient named Michelle passed away. She was only 50 years old. She’d been battling MS for over 20 years. Debra is dispatched to her home.
The little brown house is shrouded by trees. Stray cats eat free food on the rusted red porch. Inside, Michelle lies in her hospital bed with her eyes slightly open. Debra’s there to help Michelle’s husband Ross. He quit his job in 2000 to take care of his wife.
“So eight years,” Debra says.
“She was permanently bedridden,” Ross replies. “This is the way it’s been. But like everything in life, it all comes to an end I guess.”
His voice sounds steady when he speaks, but his eyes are full of tears as he remembers his wife.
“I’ve never seen a women fight something like she did,” Ross says. “She spent years on that walker because she knew when she got in a chair she’d never get out. The pain it caused her.”
Ross talks for more than an hour. Debra listens and commiserates. It’s at these moments, even more than when she’s providing medical care, that Debra feels her work is appreciated.
Appreciated, indeed.
* * * * * * *
Jim Downey
Filed under: Alzheimer's, Daily Kos, General Musings, Health, movies, Preparedness, Publishing, Society, Writing stuff
I mentioned in passing last week that I was working on all my care-giving posts for a book. Here’s a bit more about that project, as it is tentatively shaping up.
Sometime last year, when I cross-posted one of those entries on Daily Kos, I discovered that there was someone else there who was in pretty much the exact same situation: caring for a beloved mother-in-law. For a variety of reasons, it is fairly unusual to find a man caring for a mother-in-law with dementia. We didn’t strike up what I would call a friendship, since both of us were preoccupied with the tasks at hand, but we did develop something of a kinship, commenting back and forth in one another’s diaries on that site. Our paths diverged – he and his wife eventually needed to get his mother-in-law into a care facility, whereas my wife and I were able to keep Martha Sr home until the end. But the parallels were made all the more striking by those slight differences. In the end, his “Mumsie” passed away about six weeks before Martha Sr died.
Recently this fellow and I picked up the thread of our occasional conversation once again. And discovered that both of us, independently, had been thinking of writing up a book about the experience of care giving. It didn’t take long before we realized that together we could produce a more comprehensive book, and a lot more easily, drawing on our individual experiences to show similarities and different choices. A few quick emails sorted out the pertinent details – basic structure of the book, that all proceeds from it will go to the Alzheimer’s Association (or them and other related organizations), some thoughts on publishing and promotion – and we were off and running.
For now, I’ll just identify him by his screen name: GreyHawk. By way of introduction, check out this excellent post of his at ePluribus Media, where he very neatly explains the *why* of our decision to write this book:
Special thanks to Jim Downey for the supplying the links to the video and to his blog, and just for being him; my wife and I took comfort from the fact that we were not alone in our situation, and that we knew at least one other couple who were going through a very similar experience to our own.
That’s it right there. Millions of Americans are facing this situation today, and millions more will in coming years as the baby-boomer generation ages. I’m not a scientist who can help find a cure to the diseases of age-related dementia. I’m not wealthy and able to make a significant difference in funding such research. But I can perhaps help others to understand the experience. GreyHawk and I are going to try, anyway. I know that my wife and I found comfort in knowing that we were not alone in this. So did he and his wife. If we can share that with others, and make their experience a little more understandable, a little easier, then that will be a worthy thing.
Wish us luck.
Jim Downey
(This post has been expanded and rewritten.)
Been a long week. I mentioned the other day that it had been a rough day for me personally. That was the 37th anniversary of my mom’s death in a car accident. It’s always an emotional day, but it hit me harder this year than it has for a long time, probably because of Martha Sr’s death early this year.
In addition to that, we’re in the midst of doing a massive re-arranging of the house, following the division of the household possessions. It’s more than a bit of a juggling act, because at the same time we’re having to deal with things still here that no one in the family wanted. The chaos of having my home environment thus disrupted is hard on me, but the whole thing is harder on my wife, who now has the unenviable task of going through all her mom’s remaining things and deciding what to do with it all. Because with each dress, each photograph, each trinket, there is emotion, made tangible. To shed these things feels a little bit like abandoning the memory of her mom.
* * * * * * *
Whew.
I just finished going through and editing all the posts related to caring for Martha Sr, up to her death. It’s something I’ve been working on the last couple of days, part of the preparation for getting that material in shape to be a book I am collaborating on with someone else (more on that later).
Almost a hundred posts. Something like 40,000 words.
And an untold number of tears.
Wow. She was a remarkable woman. It was a phenomenally rewarding experience. I hope that I am able to convey that. I hope that what I have to say will help others get through, perhaps even to cherish, the time they spend caring for a loved one this way.
But for now, I’ll have a drink, and cry.
* * * * * * *
Jim Downey
Filed under: Alzheimer's, Daily Kos, Feedback, Marketing, Predictions, Promotion, Publishing, Science Fiction, Writing stuff
Huh. It finally happened, a week after I turned 50. Over 10,000 downloads of Communion of Dreams.
I’ve posted a ‘thank you’ to both UTI and dKos, but I want to extend a personal thanks to all who follow the blog and have helped to spread the word of the novel. As I noted on dKos:
When I set up a website to allow people to download the novel early last year, I thought that I would just make it available until I got around to finding a publisher for the book. But then my life became completely preoccupied with the deteriorating condition of my mother-in-law (see my diaries here tagged “Alzheimer’s”, or go to my blog), and just didn’t have the time/energy for doing the legwork of finding an agent or publisher.
So the book remained available for download. And surprise, surprise, word of it spread. The most I ever did to promote it was to put a link in my .sig file here and a couple of other places where I post. The whole thing took on a bit of a life of its own, to be honest, and watching the numbers of downloads slowly climb helped to bolster my spirits during some very dark and depressing times.
OK, that’s not entirely true – I did start this blog with the goal of promoting the book and documenting the process of finding an agent and then landing a publishing deal. But the part about watching the numbers climb helping me through those difficult times of caring for Martha Sr are certainly true. The same for the feedback I have gotten through this blog. Thanks to one and all for your support, criticism, and friendship.
Huh. 10,000. That’s kinda cool.
Jim Downey
Communion Of Dreams 