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
Filed under: Alzheimer's, General Musings, Health, Hospice, Machado-Joseph, Science, Sleep, Society, Uncategorized, Writing stuff
It’s now been three months since Martha Sr died.
You’d think by now that I’d be caught up on sleep. You’d be wrong. As I look over the last few month’s posts I note that time and again that I mention sleep. It is still the default that I want more, more, more. Even when I’ve gotten a good night’s sleep, and am not fighting any kind of cold or flu, a nap in the morning or afternoon tempts me. For someone who thinks of himself as energetic, productive, it kind of goes against the grain. For someone who has a backlog of work running to years, it can be a little maddening.
Yet, sleep is still the default.
* * * * * * *
My sister called the other day.
“Thirty pounds? Wow. Be careful.”
I assured her that I wasn’t trying to overdo anything. That it was just my body moving back towards a natural set-point, as mentioned in that blog post.
But she has a good reason to be concerned: in our family, weight loss is one of the markers for the onset of the family genetic curse, Machado-Joseph disease. To be honest, this is one of the major reasons that I have always felt a little comfortable in being a bit overweight – it provided some sense of protection against the disease (which was very poorly understood or even known as I was growing up). That’s not how it works, of course, but it was always there in the back of my mind. If you’d lived with seeing what the disease does, you’d be willing to risk obesity, too.
* * * * * * *
Go back to any of the entries from last year under the tag Alzheimer’s, and you’ll see that one of the most common things I talk about is just how tired I was. For years – literally, years – my wife and I had taken turns being “on call” each night, lightly dozing while listening to a baby monitor in Martha Sr’s room. On those nights you’d barely get anything which amounted to real rest. When you weren’t “on call” sleep usually came, but wasn’t as easy or restful as it could have been – having your partner there more or less awake next to you all night wasn’t that conducive. Sure, there were naps whenever we could squeeze them in, but I would still say that my average sleep per 24 hour period was probably about 5 hours, maybe 6. Things did improve once we had a health aide three nights a week, but by then we were in hospice care, which had its own stresses and demands.
* * * * * * *
ATLANTA – People who sleep fewer than six hours a night — or more than nine — are more likely to be obese, according to a new government study that is one of the largest to show a link between irregular sleep and big bellies.
* * *
The research adds weight to a stream of studies that have found obesity and other health problems in those who don’t get proper shuteye, said Dr. Ron Kramer, a Colorado physician and a spokesman for the American Academy of Sleep Medicine.
“The data is all coming together that short sleepers and long sleepers don’t do so well,” Kramer said.
The study released Wednesday is based on door-to-door surveys of 87,000 U.S. adults from 2004 through 2006 conducted by the National Center for Health Statistics, part of the Centers for Disease Control and Prevention.
Surprise, surprise.
* * * * * * *
I’ve got a pretty strong work ethic. And it was shaped by conventional standards: get up, go to work for 8 -10 hours, come home. That’s not how I work – hasn’t been for years – but it is still the baseline instinct for me, the initial criteria I use for whether or not I am “getting things done”. So it is frustrating to feel sleepy and want a nap. That doesn’t pay the bills, get the backlog under control, get the next book written or the ballistics research written up.
Three months. Seems like a long time. And our culture doesn’t understand grief well, nor leave a lot of room for recovery that takes time. We expect people to “get over it”, to take a vacation and come back refreshed. It is part of who we are – part of who I am.
But I try to listen to my body. It is naturally shedding the excess weight I put on, now that regular sleep and exercise are again part of my life. Realistically, it is only halfway done – I’ve another 30 pounds or so to go to get back to a point which I consider ‘normal’ (though that’s still about 20 – 30 pounds heavy for me, according to the ‘ideal’). Does that mean I have another three months of wanting naps all the time? Yeah, maybe. Maybe more. I’ll try and give it that time.
I’ll try.
Jim Downey
Filed under: 2nd Amendment, Alzheimer's, Ballistics, Guns, Health, Hospice, Sleep
Sorry I haven’t posted much the last couple of days. Honestly, I am in a funk – the sort of deep-seated inertia which comes after completing a protracted project. On one level, it is just the downturn from the ballistics testing. But more, it is the still lingering exhaustion from care-giving.
Which is not surprising. You can’t expect to recover from years of poor sleep and intensely caring for someone else 24 hours a day in just a few weeks. Particularly not when we’re still very much dealing with resolution of the estate (strangers are here right now going through things, giving us estimates on the value of some items) and trying to play catch up on professional and personal obligations. We collapsed immediately following the memorial service for Martha Sr, but then tried to pretend that we were recovered, to get on with the life which had been put on hold for so long.
But now it feels like it is catching up with me again. Like how a battery can get a ‘surface charge’ quickly, but also wears out again quickly. I need a prolonged period of recovery and recuperation. That, however, is not likely to happen. There are books to repair, bills to pay, years worth of things to catch up on.
So, forgive the slight break. I’m not burned out – I still have a lot to say, to do, to write about here. I’m just tired.
Jim Downey
Filed under: Alzheimer's, Bipolar, Blade Runner, Book Conservation, Daily Kos, Depression, Hospice, movies, Weather
Seems a bit ridiculous for someone 6’2″ and pushing 250 pounds to be “feeling small”, but that’s about the best characterization of my emotional state today. Bit of a headache, some intestinal issues – not ‘sick’ exactly, but just under the weather.
And what weather. What was mostly sunny and near 70 yesterday and Saturday is cold, grey, wet and very unpleasant today. 35 for the high, sleet/freezing rain this afternoon and snow scheduled for tonight and tomorrow. The kind of day that makes the cats curl up on the radiators and refuse to budge.
Both my good lady wife and I are feeling this. I think it is just part of the natural let-down, the ebb & flow of recovery from being care providers for so long, of grieving. I cross posted this diary (with some additional explanatory material) to Daily Kos yesterday, and it generated some really good discussion. But I think it left me feeling a bit wrung-out. For the longest time I have been able to attribute any mild depression or exhaustion to the stress and demands of care-giving, but the fact remains that I do have a mild bipolar condition. I suspect that for a while things are just going to oscillate before reaching some kind of equilibrium once again.
So, take it a bit easy today. Maybe go watch Blade Runner or something this morning, then see if I can accomplish some more conservation work this afternoon. One step at a time.
Jim Downey
Last night, my wife washed off the blackboard which hangs in the kitchen.
* * * * * * *
I just got back from a quick trip to KC to pick up the first large load of books from the seminary. Simple. Got up this morning, usual routine, jumped in the car and drove to KC. Met with the client. Selected about 60 volumes to start with, wrapped them in cling film, boxed ’em up. Put the boxes in the car, drove home, pausing to check out a new store just off the highway – and amazing myself that I didn’t have to call home to coordinate the slight delay.
* * * * * * *
I sent this note to a friend:
Mostly I’ve been getting work done, at least in the afternoons. Feels good to be able to focus in and do it – a nice affirmation, and there is that joy that comes with doing something well which most people can’t do. Still struggling to shake off the last effects of the flu, which is annoying, but there is clear progress.
And that has been the real change this week. Each afternoon I’ve been able to just dive in and work. For hours. Very productively. Such a change.
* * * * * * *
It’s the little things. Yes, there are the larger changes: more sleep, no need to go around always listening to a monitor, being able to come and go as I please. Those I expected, even if they have taken some adjustment. But it’s the little things that catch you unprepared.
Last night, my wife washed off the blackboard which hangs in the kitchen.
The blackboard which for years had our contact phone numbers on it. Those were first put there by Martha Sr. years ago, when her memory was becoming undependable and she might need to call someone for help. Then they remained even once we moved in here, since both my wife and I still had our jobs elsewhere during the day. After I closed my gallery and moved home that was no longer the need, but by then they were an institution. More recently, long after Martha Sr had stopped using the phone, the numbers were there as a quick resource for the various respite care workers and whatnot, in the event of an emergency.
Last night, my wife washed it clean. It was time to move on.
* * * * * * *
Jim Downey
Filed under: Alzheimer's, Book Conservation, Firefly, Flu, Health, Hospice, Joss Whedon, movies, Predictions, Science Fiction, Serenity, Sleep, Society, Writing stuff
Last night we settled down with some dinner to watch a bit of Firefly, settling on Serenity (the episode, not the movie). At one point fairly early on, when plans have gone south at several junctures, the captain of the ship (Mal) is considering options, trying to make the best of a not-great situation. There’s this little bit of dialog:
MAL: We don’t get paid for this, we won’t have enough money to fuel the ship,
let alone keep her in repair. She’ll be dead in the water anyhow.
(Mal turns to the others)
We just gotta keep our heads down and do the job. Pray there ain’t no more surprises.
I looked at my wife, and we just nodded to one another.
* * * * * * *
We did a hard thing. And we did it well.
Caring for my MIL for years somewhat warped my perspective. First and foremost in our consideration was always what her needs were and how best to meet them. I’ve often talked about what that meant in terms of rewards and sacrifices, and I don’t intend to rehash that now.
But a couple of things have changed with her passing. First off, is the odd sense of disorientation. I’ve compared it in discussion with friends with almost having a sense of agoraphobia – a nervousness when out in the world I’ve never felt before. It’s really just a conditioned reflex, and will fade as I adjust to the lack of need to always being worried about Martha Sr.
Another thing which has changed is the need to return to something resembling a ‘normal’ life, with the usual requirements of work. I don’t mind work, never have. My life has never been easy (though it certainly could have been harder), and I’ve never expected it to be otherwise.
But sometimes you wonder if maybe it couldn’t be just a little bit easier.
Caring for Martha Sr those last weeks was more demanding, and lasted longer than anyone expected. Getting hit with the flu so hard following seemed a bit gratuitous, in the sense of the universe having fun at our expense. Both my wife and I are behind on our work, and while our clients understand, that doesn’t help the cash flow situation. I knew these days would come, and things would be a little rough for a while until we got settled again. But we’ll manage.
* * * * * * *
We did a hard thing, and we did it well.
What has come of a bit of surprise has been how some people have responded to that. There’s been some discord in the family about the disposition of Martha Sr’s possessions, borne mostly out of a misguided sense of guilt, from what I can tell. It’s really unfortunate, but everyone has their own way of reacting to death. If we’re lucky, with time the matter will sort itself out with a minimal amount of damage.
I’ve also seen others in different forums who have almost felt like they had to defend their own decisions regarding a loved one who has Alzheimer’s or some other debilitating illness leading to hospice care. I’ve witnessed those who almost seem resentful that we did what we did, because it somehow implies that they did less – that they cared less.
No. We were able to make this work out. Barely. Everyone has a different situation, and each family, each person, must come to their own conclusions, their own solutions. None is better or worse than another. Because my wife and I don’t have kids, we didn’t have to juggle that aspect of life at the same time. Because we live here in the same town as Martha Sr, and have professions which allow a considerable flexibility in terms of work hours, we were better able to adapt to providing care at home than most. Our solution worked for our situation – barely. Those final months were very demanding, and I will admit that I was pushed further than I would have thought was possible, and failed and succeeded in ways I never expected.
I will not judge another – this experience has taught me humility.
Jim Downey
Communion Of Dreams 