Filed under: 2nd Amendment, Alzheimer's, Ballistics, Book Conservation, Gardening, Guns, Hospice, Politics, YouTube
Sorry I’ve been busy and not writing as much here – I’ve been juggling a number of things all at once, some of which has sucked up a lot of my creative energy. A partial list:
Getting work done on the major upgrade for BBTI (check out this post on the blog!)
More work on the Caregiving book – I think we’ve now finished with all the material we’ve written about the experience previously, as well as a lot of ‘primary source’ material (emails, LiveJournal entries, et cetera). Gathering and selecting all of this has been a significant task, as well as a powerfully emotional one. Now that all that is together, we need to switch gears and go through it all with an eye to tweaking and editing – another big job.
Have another iron in the fire related to some local/neighborhood politics and personal stuff that has sucked up a fair amount of energy.
Trying to get back on my feet with my conservation work, as well, of course.
And then there’s the necessary (and enjoyable) parts of living in an old house with a big yard and a garden – it’s that busy time of year for such things.
And that’s a partial list. Have some other things going on that are entirely speculative, not to mention the usual day-to-day stuff of living and owning your own business.
But you know, it feels pretty good.
Cheers!
Jim Downey
Spent a chunk of this morning working on the care-giving book, and came across this post:
October 23, 2007, 10:22 am | Edit this
Filed under: Alzheimer’s, Health, Hospice, Science, Sleep, SocietyMade a routine trip to the big-box store this morning, to stock up on catfood. I got one of those large boxes of 48 cans of different flavors my cats like. And when I went to put it away, the “easy open” tab didn’t. Instead, I wound up just destroying the whole box, ripping and tearing, so I had access to all the cans included.
It felt wonderful to be so destructive.
There are days like that for all of us. After a trip to the store, dealing with idiots who don’t know how to negotiate a check-out line. Or sitting behind the twit at the stoplight who somehow misses that the light changed and the cars in the other lane are passing him, getting his shit together just in time to slip through a yellow light and leave you sitting there for another cycle. Whatever it is, you just want to take out your frustrations in a safe and relatively sane way.
I have these days a lot. Part of it is just the toll of being a long-term care provider for someone who has a tenuous grip on reality but can be amazingly stubborn and focused in her determination to do something unsafe (or just highly annoying). But part of it is simply the effect of long term sleep disruption/deprivation that goes with providing care around the clock. I’ve known this for ages, and written about it several times. Anyone who has had insomnia, lived with an infant, or just had a bad string of luck sleeping for a few days will understand completely how grumpy and intolerant it can make you.
And I chuckled a little bit at myself. It’s helpful, and part of the healing process, I’m sure. Why? Well, because last week I picked up another such box of catfood. And I carefully, quickly, and with little real thought disassembled the box – not just opening it as intended, but popping the flaps off at each end, so the whole thing would flatten perfectly for recycling. Then I put away the catfood, and folded the box and put it in the bin for recycling.
What a difference 15 months has made.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, NPR, Predictions, Preparedness, Science, Sleep, Survival
No, I don’t know what it means.
It was one of those things I woke up thinking in the middle of the night, a week or so ago. So I wrote it down.
Why did I wake up in the middle of the night, thinking such a thing? Good question. It was about 3:00, the usual time I would wake and go check on Martha Sr the last couple of years of her life. And even though it’s been almost a year since her death, I still wake about that time fairly often. I try and get back to sleep, and usually succeed. Because I know sleep is important to my recovery.
I’ve mentioned several times the steps I am taking to get my health under control, and why. For the last six weeks now my blood pressure has been stable in the 145/85 range. Still high, and next month when I see my doctor we may need to tweak my dosages again, but about 90/40 points better than it was three months ago. The meds I’m taking, a beta blocker and a calcium channel blocker, are doing their jobs and helping me detox from my cortisol and norepinephrine overloads, but I’m not past it all yet. My waking at night, even occasional bouts of insomnia, are evidence of that.
And researchers have added another level of understanding to just how dangerous this sleep disruption is:
Morning Edition December 24, 2008 · The human heart requires a certain amount of sleep every night to stay healthy, and that link between sleep and heart health is stronger than researchers suspected, according to a report in the Journal of the American Medical Association.
* * *
When they put it all together, the researchers got a surprising result. Among these healthy, middle-aged volunteers, those who averaged five or fewer hours of sleep had a much bigger incidence of silent heart disease.
“Twenty-seven percent of them developed coronary artery calcification over the five years of follow-up,” Lauderdale says. “Whereas among the persons who slept seven hours or more, on average, only 6 percent developed coronary artery calcification.”
In other words, the sleep-deprived people had 4.5 times the risk of heart disease — and that’s after researchers subtracted out the effects of other known coronary risk factors, such as high cholesterol, high blood pressure, diabetes and smoking.
It remains to be seen why too-little sleep is linked to clogged coronaries. Maybe it has something to do with stress hormones. Lauderdale says other studies have shown that depriving people of sleep raises their levels of cortisol, one stress hormone.
I don’t yet have any indication of serious heart disease. The preliminary checks from visiting the doctor over the last few months haven’t turned anything up, but she has been mostly concerned with getting my blood pressure under control. We’ll be doing a more complete exam in the new year, now that this other issue is less of an immediate concern.
That’s not to say that I expect that we’ll find anything. But neither would it surprise me if we did, given what else I know about what the stresses I’ve placed my body under over the last five years. I’ve been my own puppet, dancing at all hours.
Maybe that’s what it means.
Jim Downey
“I’m glad it was just the two of us. Seems appropriate.”
* * * * * * *
My wife’s family settled in Missouri in the Nineteenth century. I don’t know (or I should say, don’t remember) all the details, but they wound up south of here in Maries County. They started a small community which no longer survives, and a church there that does. The family still meets in the church annually for a John Family reunion.
I’ve mentioned previously my own connections to the southern part of the state, and how much I actually enjoy going there. Particularly this time of year, when the air is crisp but not cold, when there is fall color starting to settle onto the trees. It’s the reason my wife and I decided to get married in October.
So there was some pleasure in the drive today down highway 63. But still, we both cried.
* * * * * * *
I spent some time this afternoon reading journal entries from my partner in writing, dating back to the early onset of his mother-in-law’s Alzheimer’s. Raw stuff. Honest stuff. Bits about some of the early signs of declining mental ability, confusion about where she was, what was happening. How he and his wife were trying to cope with it. And now and then, when his MIL had a particularly bad period, or her health required hospitalization, wondering how long it would be before “Mumsie” passed away, how long he would be able to see through the role of care providing.
Thing is, this was *two years* before her actual passing.
Sometimes, the only way you can keep going is if you don’t know how long you’ll have to do so. If you knew the true length of the road ahead, and the condition of it, you’d be too likely to give up.
* * * * * * *
This evening I’ll fast after dinner. I go in in the morning and have blood drawn for tests, and later this week I’ll meet up with my doctor for a follow up to my earlier exam. We’ll find out what things other than my blood pressure need attention. We’ll also see if I need to do something in addition to the beta blockers mentioned in that post – possibly, though my bp is down 50/20 already. This is a huge improvement, though I have about that much further to go to get to ‘normal’. Yeah, like I said, it was scary bad.
But I’ve begun to notice other improvements. I sleep longer, better. There are even nights when I don’t wake up at 3:00, listening hard for the sound of Martha Sr’s breathing over the baby monitor.
* * * * * * *
“What are you thinking?” my wife asked.
I watched leaves skittle across the road, tumbling in the draft of the car ahead. A wide and glorious vista opened to the north, ridge after ridge of green, little clusters of other colors here and there. “Lots of things.”
Yeah, lots of things.
“”I’m glad it was just the two of us. Seems appropriate.”
She nodded.
“I mean, we were with her pretty much on our own. It just seems appropriate that it was the two of us to bury her cremains.” I paused, thinking of the memorial service. That was for the family, for the friends. We’d decided on making the trek to the family church, where there is still half the graveyard reserved for family members, on this day, because it was the anniversary of her parents.
I’m an atheist, and I don’t believe in the survival of the soul or any such. But it seemed like the appropriate day to bury Martha Sr, there next to her husband. And that Martha Jr and I should be the ones to do it.
I now know how long the road is, and in what condition. But I am glad I drove it the full distance.
Happy anniversary, Martha and Hurst.
Jim Downey
Filed under: Alzheimer's, Health, Hospice, Preparedness, Sleep, Survival
I mentioned in a comment on UTI yesterday that I had a doctor’s appointment, and expected to find there that I had a respiratory infection that needed treatment. Well, I did, and I do, and now I’ve started a 10-day regimen of antibiotics.
But that’s not the reason why I made the appointment two weeks ago.
* * * * * * *
Almost a year ago I wrote a very raw and painful post titled “Beats having a heart attack.” Here’s the crucial passage:
And as I stood there at the sink, washing the dishes, thinking favorably on the option of having a heart attack, it sunk in that I was done. I mean, I’d been considering that a heart attack might be the best solution to my problems. Yeah, a heart attack. Hell, at 49, I’d probably survive it. It’d come as no surprise to anyone, given the kind of physiological and psychological stress I’m under. No one could blame me for no longer being a care-provider for someone with Alzheimer’s.
Well, I didn’t have a heart attack. And I wasn’t done. We made it through six months of hospice care for Martha Sr – easily the most demanding period of care providing. But that doesn’t mean that there wasn’t a cost to me, physically.
* * * * * * *
I sat in the exam room, waiting to meet the new doctor. My face was flushed, my heart racing. I was having a low-grade anxiety attack.
No big deal, right? Lots of people get nervous around doctors.
But I don’t. Hell, I put myself through grad school working in an outpatient surgery unit. Because it was a remote location far from the central supply facility for the hospital, they had established a large sterile storage area adjacent to the 8 surgical theatres. For five years I manned that storage area, keeping the surgical teams supplied. And I was in an out of operations constantly, bringing necessary sterile supplies to the surgical teams. Even my designated break room was shared with the surgical staff. In that five years I got to see and know a lot of doctors in almost every imaginable medical situation, as well as personally. I’ve never been nervous around doctors since.
The doctor knocked and then came into the room. I was sitting on the exam table, still fully clothed. I hadn’t been told to undress or anything by the aide who had parked me there half an hour earlier, so there was no modesty issue connected with my anxiety.
“Hi, I’m Dr —.”
“Jim Downey. Pleased to meet you.”
She held out a hand, relaxed. “Likewise. What can we help you with today?”
I shook her hand, then passed to her a book I had been browsing through. One I had seen on the shelf there in the exam room. “This was my life for the last 5 years.”
* * * * * * *
I’ve talked about the stress of care-giving before, and how I am now in a detox period from a prolonged norepinephrine saturation. As I wrote in June:
The problem is, those stress hormones come with a price – they exact a toll on the body. For most people, occasional jolts of this stuff isn’t really dangerous, but for someone with a heart condition or an aneurysm waiting blow, such an event can kill. That’s why you see those warning signs on roller coasters.
And consider what happens to someone who slowly ramps up their stress hormone levels over a prolonged period. That’s me. My formerly excellent blood pressure and heart rate is now scary bad, and has been for a while. I’m lucky that I started this in good condition – but think back to this episode last year, and you’ll see what kind of effect the excessive stress hormone levels had. In the final year of care giving, my system became saturated with stress hormones – my ‘fight or flight’ reflex changed from being related to a sudden threat to being an ongoing condition. I adapted.
That was why I made the doctor’s appointment. And the reason I was nervous was because I was afraid of what the cost I had imposed on my body actually was.
* * * * * * *
Dr — took the book, looked at it. She nodded, then looked at me. “Tell me about it.”
We talked.
We talked about the care-giving, when it ended, what I had tried to do to care for myself during and since. She looked over my records, asked a few questions, did a few of the typical exam things doctors do to confirm their innate understanding.
“Well, let’s treat this respiratory infection.” She paused, looked at me. “You know, your blood pressure is quite high.”
Actually, my blood pressure was scary bad. When the aide took it earlier, she was startled by how high it was. Let’s put it this way – it’s in the range where if it were just a bit higher, hospitalization would be indicated in most cases. If I walked into an ER with that blood pressure, people would start rushing around.
“Yeah, I’m not surprised.” I told the doctor what I’ve said in those post cited above.
She nodded, realized that I knew what I was talking about. “How would you feel about starting a drug therapy to get it under control?”
“What did you have in mind?”
“Beta blocker.” She looked at me. “You may not need to be on it forever. The other things you are doing and recovery from the care providing might be sufficient – later. But for now, I think it would be wise.”
It was the right call. Beta blockers act specifically to counter the effects of stress hormones, especially norepinephrine.
“Sure. Let’s do it.”
* * * * * * *
So, that’s part of the cost of care-providing, documented by medical authority. It’s too early to say whether this drug therapy will be sufficient. I do still need to shed weight (though I’m now only about 20 pounds over what was my ‘normal’ weight about ten years ago), and keep an eye on diet and exercise, control stress, get plenty of sleep. And there’s no way to say how much long-term damage I did to my system by my period of high blood pressure (which increases the risk of stroke, dementia, heart disease and kidney damage). There’s no indication yet that there’s been any long-term damage, but . . .
I’m still glad I did it.
Jim Downey
To a man I never met, and whose life I would not pretend to understand.
Larry Sievers has died from the cancer about which he blogged and reported the last several years. He was an exceptional writer, and brought us insight into his battle with a brutal honesty and grace. More than that, he built an online community of which he was justifiably proud. As he said in the farewell piece on NPR this morning:
But I am at peace because I have done my best to make a difference. I hope when the real time comes, someone says that about each of us.
No worries, Larry. Thank you for all you did in sharing your humanity with us all.
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
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
(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: 2nd Amendment, Alzheimer's, Book Conservation, Daily Kos, Failure, Feedback, Fermi's Paradox, General Musings, Guns, Health, Hospice, Science Fiction, Writing stuff
Well, we didn’t make the “10,000 downloads before I turn 50″ goal. Still about 225 shy of 10k. Which is OK. It’ll give me another reason to celebrate when it happens!
I did get a nice comment over on dKos in the cross-posted diary there yesterday:
Happy birthday Jim, read your book again the other day, liked it as much as the first time. When’s the prequel describing the fireflu and the sequal where we actually have contact?
As I’ve discussed here often, the recovery period from caring for Martha Sr is taking longer than I had initially expected, and as a result I haven’t been as quick to return to writing St. Cybi’s Well as I hoped. But that’s OK, too. I find that I am feeling somewhat energized by crossing the threshold* of turning 50. It has helped that we’ve got a lot of the household stuff packed up and sent off – now my wife and I can start rearranging things here to suit our preferences. It’s funny how little things can clear the slate, allow you that wonderful feeling of starting something fresh. It also gives me more focus and enthusiasm for finishing other projects – the ballistics testing website, working on the book about being a care provider for someone in the last year with Alzheimer’s, even just my conservation work.
So it’s an exciting time, a good time, even with the mild disappointment that I didn’t get all I wanted for my birthday.
Jim Downey
~~~~~~~~~~~~~~~~
*Threshold, by the way, was the original working title for Communion of Dreams, playing off not just the impending revelations of the reality of the universe and our place in it, but also on the idea of crossing the threshold of the dimensional boundary layer which has isolated us and therefore explains Fermi’s Paradox. Unfortunately, as I discovered, there were already several uses of that title in SF alone. Ah, well. I like Communion of Dreams even more – it’s more evocative, if less succinct. – JD
