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
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
Filed under: Connections, General Musings, Health, Predictions, SCA, Society, Survival, Violence, Writing stuff
The past is not dead. In fact, it’s not even past.
William Faulkner.
I’ve read my share of Faulkner, as appropriate for someone getting through a high school English class in the 1970s. And then I read a lot more in graduate school. Always loved his use of language, but I never really ‘got’ that quote, though it nicely sums up one of the major themes of his writing. Partly, this was just being young. Partly it was because of a conscious effort on my part to forget some of the worst aspects of my own personal history.
Oh, sure, I understood how the past shapes the future. In fact, that was a big part of my interest in both economics (one of my college degrees) and the SCA – knowing history allows you to understand how things develop in the ways they have, and can provide analogs which can be useful to understanding new situations when they arise. (That is discussed explicitly in Communion of Dreams, in relation to the the industrial archaeologist brought onto the research team.) But for me, the past has always been the past: dead, immutable.
Until now.
* * * * * * *
As mentioned previously, we’re in the process of dividing up Martha Sr’s estate. This includes the household items. When someone has lived in one house, and raised a family there, for over 50 years, lots and lots of stuff accumulates. In an effort to be completely fair and above board, we’ve had assessors in to evaluate the furniture and household items, so that each family member involved can be sure that they get their share. This coming weekend my wife and her siblings are going to go through and divvy everything up. Then over the coming weeks stuff will get moved out and we’ll deal with whatever no one wanted. Eventually, only those things which are ours will remain, and my wife and I can proceed to actually getting settled here.
Because when we sold our house and moved in here to care for Martha Sr, we wanted to disrupt her home environment as little as possible. We wedged ourselves into rooms which she didn’t use much, put a lot of stuff into storage. It was a pain, but one we were willing to put up with while we cared for her.
Now, of course, I am looking forward to actually getting settled. As I told a friend recently:
It was frustrating to be shoe-horned in here the last six years, but I was willing to put up with it for Martha Sr’s sake. As I have been recovering from the care-giving, I have been wanting more and more to feel less and less cramped up here – I can only put up with this level of chaos and annoyance for so long.
But of course it is a little different for my wife, who now sees her childhood home being split up, her memories associated with this or that piece of furniture bereft of a physical connection.
* * * * * * *
I never met my father in law. He died before my wife and I got together. But he was something of a local character, and over the years here I have had many people tell me anecdotes about him. Seems most people either loved him or hated him. He evidently carried on a number of long-term feuds.
One such was with a local builder, who is now the executor of a family trust which owns the property next to us (part of a large tract in our neighborhood which has caused some grief for people here). For various legal reasons (limitations on the trust), this property has always been undeveloped. But now those reasons are being resolved. And it turns out that what we thought for some 50 years is part of our property is actually part of the trust. This includes a substantial strip of our lawn and even a chunk of my garden, about half of the fenced in area I created for my dog, and a substantial number of huge trees. My wife’s family has maintained and used the strip of property for that entire time.
So for the better part of the last year we’ve been involved in some legal wrangling to settle this issue. Because, you know, the matter couldn’t be settled simply, due to the aforementioned feud. And yesterday things came to a bit of a head, as the son of the executor came onto our property to ‘do some maintenance’.
I had words with him.
OK, let’s recap: I, who never met my father-in-law, had a potentially dangerous confrontation with the son of a man who had a feud with my FIL.
Given my current attempts to recover from prolonged and excess stress, this could have gotten stupid very quickly. And I spent a lot of time afterwards carefully considering the situation. And somewhere in there last night I realized that I finally understood just exactly what Faulkner meant. Now I know why border disputes and blood feuds are carried on for generations, pulling people in who otherwise would react in more sane and rational ways. Because, without desire or intent on my part, I am in the middle of exactly one such episode of history intruding on the present.
This is insane.
* * * * * * *
My wife and I discussed the matter at some length last night, once I had stepped back from the adrenaline stew that had me jumped up. Our attorney will seek a restraining order on the other parties to prevent them from doing anything to the disputed strip of property until the matter is resolved in court – to just keep things ‘status quo’. I have asked for specific instructions from our attorney about what I should do in the event that we have a recurrence – ignore it, call the cops, confront them, what?
But beyond that, I have decided that I am going to try and disentangle myself from this historical mess. I just want a resolution to the matter, and of the feud, so I can get on with my life. But I cannot make that resolution – this is a problem for others to sort out; their problem, not mine. Because I finally ‘got’ what Faulkner meant, and understand that unless I disentangle myself I am likely to contribute to a perpetuation of this feud, damaging my own sanity and soul in the process.
Jim Downey
I worked over six hours yesterday. Yeah, I took a few breaks, but still. Something of a milestone.
* * * * * * *
Humans are remarkably adaptive creatures. We can adjust to a wide range of environmental conditions, accommodate significant changes in diet, accept shifts in social structure. Just look around the world and you’ll see what I mean, from variations in culture in response to climate to how people cope with extreme conditions such as war and famine.
There can be a toll to such adaptations, of course, depending on what they are, how long they last, and the particular individual or society.
In caring for Martha Sr I slowly changed my routine and focus to better meet her needs, so most of the changes I went through in that time were barely discernible from day to day. Over the four plus years of intense care giving, however, both my wife and I underwent a very substantial shift in what could be considered our normal life.
I’ve mentioned some of those changes previously – the weight gain, the loss of concentration, the lack of sleep. But I haven’t discussed the operative mechanism behind all those changes: stress. Specifically, the physiological changes in hormonal balance which come with prolonged stress – the so called stress hormones of cortisol and norepinephrine. Most people know these as the ‘fight or flight’ reflex effects: boost in blood pressure and heart rate, heightened sensory awareness, a slight time dilation. It is our body’s way of preparing us to survive a threatening situation. It is a very powerful experience, and can even be a bit addictive – anyone who characterizes themselves as an ‘adrenaline junkie’, who gets a kick out of doing dangerous things or watching scary movies, is talking about just that.
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.
So now I am in detox. That’s what the last few months have been all about. Slowly adapting back to something resembling normal, at a very basic physiological level. More sleep. More exercise. Better diet. As I’ve discussed recently, I have started to see some real changes. But as a good friend who is also a doctor reminded me recently, it will likely take a year or longer to make this transition, for my endocrine system to settle down. Recently I have taken some additional steps to help this process, in terms of changes to diet and food supplements. But it is a long and winding road I need to walk now.
* * * * * * *
I got up about 3:30 this morning for a potty run. Stepping from our bedroom into the bathroom, I froze: there was a light coming up from the downstairs that shouldn’t have been there. I quietly backed into the bedroom, put on pants and glasses, grabbed my cell phone, a pistol and a powerful flashlight.
I’m no ‘macho guy’ or wanna-be hero. The smart thing to do if you have an intruder in your house is to batten down the hatches where you are, call 911, and let the police deal with it.
But what if you just left a light on by accident?
I was about 90% sure that was what happened. So, carefully, I went to investigate. Checked the house completely. Everything was safe and secure. The cats were confused by what I was doing up so early.
I went back upstairs, hit the head, put away the various items I’d picked up, and crawled back into bed.
And have been awake since.
After an hour or so, I just got up. Because I knew I wasn’t getting back to sleep anytime soon. That’s the problem – the stress hormone receptors in my brain are so adapted to a regular high dose of adrenal squeezin’s that they hungrily lap the stuff up when it comes their way.
* * * * * * *
I worked over six hours yesterday. Yeah, I took a few breaks, but still. Something of a milestone.
Six hours may not sound like a lot. After all, most people are expected to work eight or more hours at a time, with a couple of paltry breaks.
But for me, regaining the ability to focus in, to concentrate and work for that length of time is a real improvement. It shows that I am making progress in detoxifying my system, of readjusting the endocrine balance.
Today is going to be a bit of a bitch, though, thanks to the early-morning jolt of adrenaline. But I know how to handle it, and hopefully it won’t cause too much back sliding. We’ll see.
The road is long and winding, and I must take it where it leads.
Jim Downey
Filed under: Babylon 5, Emergency, General Musings, Health, J. Michael Straczynski, JMS, movies, Predictions, Science, Science Fiction, Society, Survival, Travel
This is disturbing:
‘Back from dead’ case stuns doctors
THE case of a man whose heart stopped beating for 1-1/2 hours only to revive just as doctors were preparing to remove his organs for transplants is fuelling ethical debates in France about when a person is dead.
The 45-year-old man suffered a massive heart attack and rescuers used cardiac massage to try and revive him without success before transferring him to a nearby hospital.
Due to a series of complex circumstances, revival efforts continued for longer than usual for a patient whose heart was not responding to treatment, until doctors started preparations to remove organs.
It was at that point that the astonished surgeons noticed the man was beginning to breathe unaided again, his pupils were active, he was giving signs that he could feel pain – and finally, his heart started beating again.
Several weeks later, the man can walk and talk.
As John Sheridan might say: “Death? Been there, done that.”
Deciding on when someone is irrevocably dead is actually a very difficult thing to do, and through the ages there have been many instances where people thought to be dead have either spontaneously revived, or been re-animated through the use of medical technology. The Victorians had something of a phobia about premature burial, but the concept of a lych gate has existed for centuries (my first encounter with such can be found here, towards the bottom).
When you add in a legitimate need for organs appropriate for transplantation, which need to be ‘harvested’ quickly, then you’re pushing two conflicting timelines. This is evidently part of the problem which has led to the ethical debate mentioned above. Add in new research into ‘suspended animation‘, and things are going to get even more confused.
Welcome to the future.
Jim Downey
*recognize the quote?
Communion Of Dreams 