Communion Of Dreams

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

Whoa - this is *such* an improvement!

garfield minus garfield

Who would have guessed that when you remove Garfield from the Garfield comic strips, the result is an even better comic about schizophrenia, bipolor disorder, and the empty desperation of modern life? Friends, meet Jon Arbuckle. Let’s laugh and learn with him on a journey deep into the tortured mind of an isolated young everyman as he fights a losing battle against lonliness and methamphetamine addiction in a quiet American suburb.

Jim Downey

Hat tip to Tim! Cross posted to UTI.

I was going to title this “I’m sick and tired . . . of being sick and tired.” After yet another night of coughing jags, tossing and turning, getting up to take OTC meds every couple of hours, and generally being miserable in this tenth day of this flu.

But then I popped that phrase into Google, to see why it echoed so from my childhood. And a couple of clicks later I found this, and was humbled.

My tendency to feel sorry for myself is not one of my most attractive traits. I can only say that it usually is a sign that I am bottoming out, and before long I will be climbing back out of my own personal pit of despair (whether it is caused by health problems, my mild bi-polar condition, or some other source). It’s that Emerson quote, again.

So, sorry about that, Fanny Lou. Didn’t mean no offense.

Jim Downey

I suffer from a mild form of bipolar disorder, as I have written about previously. Looking back, it started in adolescence, though I didn’t understand what was going on until my mid-20s. It is mild, though, and I have never suffered either a hypomanic or major depressive episode (though I have had some very dark periods), and have been able to control the disorder with minimal impact on my life. In this sense, I guess you can say that I am a little bit crazy - nothing major, nothing which requires hospitalization or heavy pharmaceuticals, nothing which puts my life at risk. I’m just a little bit crazy.

Being a ‘little bit crazy’ isn’t like being a ‘little bit pregnant’ - there is a range of severity with any mental health issue, just as there is with almost any other kind of health issue. You can have a mild case of the flu, which can be annoying, but doesn’t require much in the way of treatment - or you can have the kind of flu which can kill you if you don’t have medical intervention (and perhaps even then). You can have, say, a rotator cuff problem which requires nothing more than regular light exercise, or you can have such significant shoulder problems that surgery is required. I think that this is the thing which most people don’t really consider when it comes to mental health, because of the stigma attached to mental “illness”.

And make no mistake - there is still a huge stigma attached to any mental health ‘problem’. While I’ve known for about 25 years that I’ve suffered from this mild bipolar condition, I’ve largely kept that to myself, for this very reason. Attitudes are changing somewhat, but still . . .

One good example that I have seen played out countless times in discussions about religion: atheists see belief in God as essentially irrational, in that there is no demonstrable “proof” that such an entity exists. That’s why religious belief is called “faith”. Yet if you say this, in almost any form or phraseology that I have seen over the decades, people will instantly assume that you’re saying that all believers are “delusional” and basically “insane”. And it’s not just the people of faith who will think this - I’ve seen plenty of atheists jump to the same conclusion.

But that’s silly. There is clearly a difference between types of religious faith, as well as degree, just as there is in the range and severity of mental health ‘problems’. I dare say that most people who don’t really spend a lot of time thinking about it have what can be characterized as only a nominal religiosity - ask them, and they’ll say that they believe that there’s a God, but they don’t really spend a lot of time dwelling on Him/It/Them. Even among the devout there is a wide range of manifestation of religious fervor - the little old lady who goes to her local church every Sunday and prays for relief from her arthritis pain is significantly different from the kook who straps on a bomb and goes off to blow up unbelievers. The couple who pray for the intervention of the Virgin to save the life of their child are different from, say, the guy who taps his bat three times against his left shoe before stepping up to the plate. Et cetera, et cetera.

I’ll be honest - I see all of this as ‘magical thinking’, and not grounded in reality. But it is not all the same. Much of it is harmless, just amusing and not truly toxic either to the believers or to the world. Just as my mild bipolar condition is not the same as severe bipolar disorder, let alone true depression or schizophrenia. I’ll be even more honest - most such ‘magical thinking’ is of very little real concern to me. I see the bulk of it as just adding some richness to society. And I wouldn’t even necessarily say that people should get rid of it. Hell, I can’t say that I really want to be rid of my mild bipolar condition - it is manageable, and there are benefits to it, and I’m used to it. Yeah, sure, in some ideal world I wouldn’t suffer the periodic bouts of mild depression, just as in some ideal world everyone was rational and grounded in reality.

But we don’t live in that ideal world. I’d settle for having a little superstition and magical thinking, acceptance of the fact that we all have our quirks and small problems, in exchange for getting rid of the toxic manifestations of religion as well as true mental illness. How about you?

Jim Downey

(Cross posted to UTI.)

We’re back to the train metaphor. My MIL has either been traveling via train, or is waiting for someone to arrive on a train, or is going to catch a train, or just thinks that she is presently on a train (this last happens when she’s in bed, with the bed safety rails up). I cannot help but think that this is her subconscious’ way of understanding that she is in transition from this life to whatever comes after. Why a train? Because when she was a young woman, that’s how she traveled, to St. Louis for shopping, back and forth to college.

* * * * * * * * * * * * *

But she doesn’t stop there. Yesterday morning I went to get her up from her morning nap, and she asked: “Is there a job or something I can do to earn some money?”

“Money? Why do you need money?”

“Well, to call my mother.”

“???”

“I came over here to play, and have been out playing on the grounds. Now I’d like to go home, so need to call my mother. But I was laying here thinking, and realized I don’t have any money!”

“Ah. Well, that’s OK. You can use the phone here - you don’t need any money.”

* * * * * * * * * * * * *

As I walked with the dog in the cold, stiff wind this morning, little pellets of spitting snow falling around me, I realized something I should have noticed a week or two ago: I’m a bit messed up. Lethargic, unmotivated, finding it difficult to concentrate even enough to write short entries for my blog. But I haven’t been sleeping well, either. I’ve been grumpy and short tempered, impatient and always feeling slightly annoyed. In other words, my mild bipolar condition crept into darkness, a slight depression.

Part of it is just the ongoing effort of being a care-provider, of course. Part of it is seasonal, with the grey clouds that settle in this time of year. And part of it is just personal, as we approach December 12th, the anniversary of my father’s murder. I’ve learned to expect something of a downturn this time of year, but it always seems to catch me off guard at first. You’d think after almost 40 years, it wouldn’t come as a surprise.

It’s not the vicious blackness of a full depression, and for that I am thankful. But still, it needs some tending - awareness, being a little more lenient with myself, a little more indulgent. Try to nap when I can. Worry less about my weight, enjoy some favorite foods in moderation. Work when I can, hope that my clients and readers will understand. Be as gentle with myself as I am with my MIL, at least for a while.

* * * * * * * * * * * * *

I was on-call last night. I first heard my MIL stirring around 1:00, but she settled back down again until a little after 2:00. The second time I got up, dressed, went downstairs to check on her.

I put down the safety rails, helped her sit on the side of the bed. At first touch I knew she was running a fever. I got some slippers on her feet, helped her onto the commode that sits beside the bed. Her eyes were watery, uncertain. Her temperature was 2.5 degrees above normal.

“Here, MIL, you need to take these pills,” I said, dropping her usual nighttime meds into the palm of her hand.

She looked at the pills, then at me, then back at the pills. “No.”

“???”

“I’ve already taken my pills. That woman was in here a few minutes ago, and I took them then.”

“Um, no, no one else has been here tonight. Maybe that was just a dream. These are your pills - you need to take them.”

“No!”

This was a completely new one - she’d never refused to take her meds before. “Um, yeah. You need to take those. Now. Here’s some water . . .”

“NO!”

It took me over 10 minutes of cajoling and commanding and pleading to get her to take the medications. She was adamant that she had taken them already, some memory fragment or bit of dream stuck in her head.

And it was almost two hours before I was able to get back to sleep.

* * * * * * * * * * * * *

She’s been cranky today. Stubborn, demanding, a bit petulant.

But also so very weak and confused. Perhaps another TIA. Or perhaps just another step down in her overall condition.

We’ll know more when the hospice nurse comes tomorrow. Or not. You learn to live with that ambiguity, that uncertainty. As best you can.

Jim Downey

(Cross-posted to dKos.)

This is pretty raw. I reserve the option to amend or delete it entirely later.  [9/18 7:15 AM: I've added a postscript - see below.]

I’m worn out. I’m emotionally and physically bankrupt. I’m spent, empty. Just a dry husk.

It was a *very* long day. Started with the migraine I mentioned in my previous post. Then care-giving was really rough. Worst it’s been, and that’s saying something. I don’t know whether my MIL had another little stroke, or is fighting an infection, or is approaching the end of her life, but damn - every fifteen to twenty minutes today I had to go tend to her, see what she needed. It was always some variation on the theme of her “needing to get ready to go home”, or wanting to “look outside to see if her ride is here,” or “needing to call the people she usually lives with in order to let them know that she was here”. I tried everything I know or could think of - distraction, answering questions, asking questions, reassuring, re-directing, lying outright - and nothing, nothing, would stick. Ten or fifteen minutes after I had gotten her calmed down or focused on something else, or whatever, she’d call again.

And this, of course, on a day when I was really trying to concentrate, punch through the mild migraine, get some conservation work done. Some rather delicate conservation work, at that. Work which had been promised to a client two weeks ago.

And, of course, my wife had a thing this evening that she had to go do (my suggestion that she do so - no fault to her). She got home after I had my MIL tucked in to bed and was working on the dishes.

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. Hey, it might even get someone to think about noticing my writing, since a tragic character (whether alive or dead) always gets more notice as an artist than does someone who has their life, and their shit, together.

So, that was that. I looked my own failure to continue right in the eye, and told my wife. I can’t continue to do this. I can’t deal with another day like this. Maybe later, but not now.

I thought earlier that I could do this indefinitely. But it has gotten so much harder in recent weeks. I don’t like to fail at something. I don’t like to set aside a job before it is done.

But it beats having a heart attack.

Postscript: 

Like I said at the outset, that’s pretty raw.  And I’m going to leave it as is, though following 8+ hours of sleep I feel better and have a different perspective on things.

This is one of the functions that this blog serves for me: being a form of therapy, allowing me to express things in a way that allows me to vent and get some perspective.  I get it off my chest, so to speak.

And it serves another, related purpose: to help others understand just how difficult and demanding it is being a care-provider for someone with dementia,  to share with other care-providers my stories as a form of support.  And here, I am talking about those who choose to be care-providers for friends and loved ones at home.  Professionals who do this, God bless ‘em, do not have the same perspective: they get to go home at the end of their shift (or even their double shift, in rare circumstances).  Doing this at home means you never get to leave.

I am by no means a ‘weak’ person.  Not physically, not intellectually, not emotionally.  And yet you can see what effects the constant, unending wearing has on me.  There’s a good reason why care-providers suffer huge stress-related illness, including, yes, heart attacks.

As I said, this morning I feel a lot better.  The migraine is just wisps and echoes, and I hope it remains that way.  I have this trip to meet with my new client and pick up the first lot of books, which means a couple of hours road time to allow the worries and cares to unspool behind me a bit.  Just getting out of the house for the bulk of the day will help.

I do not know where we go from here.  My wife and I discussed my exhaustion last night, when I told her that I was “done”.  But since we were already going  to change the care-giving package to allow me more time to concentrate on my conservation work in the coming months, it may be that we keep my MIL here at home and I just try and ride this out, knowing an end is in sight.  (As I told the social worker for Hospice when we first hooked up, “I can sleep on broken glass for six months, if I know that’s the end of it.”)

So, no fretting - I’m better this morning.  And while I cannot control what might actually happen to me vis-a-vis my health (beyond doing what I can to stay healthy), I’m no longer even contemplating a heart attack as a good alternative strategy.

Jim Downey

One of the hallmarks of major depression is the energy-sucking nature of the disease. For someone in the throes of such a depression, it becomes almost impossible to even get out of bed, and regular correspondence, routine tasks, et cetera, all slide by the wayside, piling up and contributing to the downward spiral.

I suffer from a mild form of bipolar disorder - what is commonly called manic-depression. The arc of my mental state can be influenced by many things, but typically runs about 18 - 24 months through a full cycle. I have never suffered through a full major depression, but I’ve been down into it far enough to have glimpsed that hell, and know I want no part of it. I’ve learned to cope with my condition, and know full well that if I were ever to slip further I would want professional help to deal with it.

One thing I find in being a care-giver for someone with Alzheimer’s is that as my charge slips further into dementia herself, the toll that it takes on me and my wife comes increasingly to resemble suffering a major depression. Basically, with the prolonged lack of sleep and growing effort to help her comes an increasing difficulty in having the energy to accomplish anything else. Last week I read the new Harry Potter book, and the effort left me completely exhausted and suffering a prolonged migraine by the end of the week. If I can get the focus to spend a few hours at the bench doing book conservation in a given week it is a minor miracle. Just contacting clients or suppliers becomes a task I cannot confront. I’ve promised someone an article on Pat Bahn of TGV Rockets, which I really want to write, but finding the energy to do so is another matter altogether.

And yes, my own mental health is stressed by all of this. I am constantly at risk of falling into the trap that I should be doing more, should be stronger. That’s my image of myself. And when I put my mind to it, I really can accomplish some remarkable things. So the temptation is to push myself further, to goad more work out of myself, to criticize myself for being “weak” for not having the focus or the energy to do this or that. That is a dangerous path.

So, I do what I can, when I can, and try and cut myself some slack the rest of the time. And this afternoon, while my mother-in-law naps, I think I will can some tomatoes. There is more conservation work waiting for me, and other writing I should do. But the tomatoes are ripe and ready, and it will be a nice change from the other tasks.

Jim Downey

OK, I feel miserable.  Summer cold, with all the joys that brings.  But I thought I would take a moment to point out this article on the new SETI Allen Telescope Array in northern California, about to come on-line.

Not that we’ll actually hear anything.  It’s clear that we’ve been embargoed, cut off from the rest of the universe until we mature some as a species.

I need a nap.

Jim Downey

(Via BoingBoing.)

When I was still new to being in business as a bookbinder, I had someone call me one morning about doing some conservation work to a musical instrument. After I carefully explained that I was a book conservator, not an artifact conservator, they said that what they needed was the replacement of a small piece of leather which had been pared down to suitable thickness and then mounted, and that there wasn’t anyone in 100 miles who could do this for him. The guy practically begged me to help him out. Finally, I relented, and told him to bring the instrument in so that I could see what exactly he was talking about, but I made no promise that I would do the work.

He was in that afternoon. Opened up his case, took out his instrument. It was an accordian, about a century old. Needed a small piece of leather to function as part of the bellows assembly, if I remember correctly. Wasn’t very big, just a few inches across and about the same wide, and would need to be mounted under a strip of metal on each side. But the leather would have to be pared down very thin - a simple, but time-consuming task. I told him that it would take altogether about an hour and a half of my time, and with materials would run about $50.00 (my rates were only $25.00 an hour then).

He looked at me like I was nuts. “But it’s only a little piece of leather!”

“Well, yeah, but it’s going to take me 90 minutes to prep the piece, remove the old piece, mount the new one, and get everything secure.”

“But this thing is only worth about that much,” he protested. “I won’t make any money on it if I pay you that much to fix it. How about $10.00?”

I sent him on his way. And learned that it was pointless for me to try and help people who don’t really need it or want it. Unless someone values my services, and wants them applied in a suitable fashion, it doesn’t make any sense for me to try and convince them otherwise.

Which brings me back to this post, which generated some good feedback here and at UTI, and in private correspondence. I’ve thought a lot about this matter over the last several days, and thanks to the discussions I’ve had I’ve come to understand that this, like the above episode, is a matter of principle for me. And the principle is that I cannot force these people to do the right thing - I can only offer my services in a suitable manner, at a fair price, and then let them decide for themselves what the best course of action is for them. It’s not my job to save the world, or even to save the books in this collection from the people who now own them. It is simply my job to do good work when contracted by those who want my services. The rest is on their shoulders.

Jim Downey

I’m adapting this from a comment I made during a discussion on UTI, now that I’ve had a chance to digest things a bit. It is a follow up to this post of last Tuesday.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

When a tragedy like this (well, any violence directed against innocents is a tragedy, really) occurs, people naturally want to look for ways to curtail the threat in the future. Unfortunately, there are no easy answers.

In 1994 something like 800,000 Hutus were slaughtered in the Rwandan genocide, and almost all of that was done with machetes. Almost 200 people were killed yesterday in Iraq, by someone using car bombs. Timothy McVeigh killed 168 with fertilizer and deisel fuel on this day a dozen years ago.

Guns do kill - something like 12,000 homicides and an additional 6,000 accidents/suicides each year here in the US. My father was one of those people in 1969, and my step-brother a little more than a decade ago. You never really get over that kind of personal tragedy, as I mention here.

But cars also kill. About 30,000 Americans a year, if memory serves. And about 18 months after my dad was killed, my mom was one of those people. But because it wasn’t an act of violence, it is somehow easier to accept that. Which is curious, because we do seem to accept that level of death in our country (and others) relatively easily.

People are violent. It is part of who we are. Now in the UK guns are almost completely outlawed - yet gun violence is once again becoming a problem in some areas. In an effort to control the results of violent behaviour, the UK is now increasingly becoming a nanny-state, outlawing the carrying of pointed knives, limiting their sale even for home use, forcing pubs to shift from glass bottles and drinking vessels to plastic ones because the others were being used to bash and cut others in pub brawls…you get the idea.

As I mention in that blog post cited above, I hate the facile arguments on both sides: that getting rid of all guns would solve the problem; and that if only someone with a legal CCW had been there they could have stopped Cho earlier. The best you can say is that it is possible that stricter gun control (even to extending to effective bans) *might* have stopped Cho from being able to murder so many so easily…or that someone legally armed on campus *might* have been able to stop Cho once he started shooting. No, there is a lot of slop there on both sides - no one knows the answer to ‘what if?’

For me it comes down to a couple of different deciding factors. We have over 200 million guns in this country, something like 80 million handguns. So, getting rid of them isn’t a practical answer for at least a generation. And prohibiting them will basically mean that you are telling criminals that they can count on law-abiding citzens being disarmed. Which means you either accept the increased power advantage of criminals, or you move towards an increasingly police-heavy state, with all of the implications that carries.

Further, the 2nd Amendment was put there for a reason: to control the worst instincts of wanna-be tyrants. The founders understood that humans being what we are, you needed to control the worst instincts of those who would rule rather than govern. They built checks & balances into the Constitution between the different branches of government - but knew that the real check and balance had to go further - had to go all the way down to the individual citizen. In preserving the right to keep and bear arms, they made sure that there was a final option available to curb dictatorship. Granted, my pistols and rifles will not stand up in a full-fledged firefight to modern military weapons - but that isn’t the point. You only have to look at Iraq to see the effectiveness of small arms and improvised explosives to see what a population can do in resisting a military force. That alone changes the calculus of anyone - foreign or domestic - who thinks that they would like to impose their will on the American public by arms.

Lastly, having the *option* of carrying a concealed weapon legally means that you have more possible courses of action open to you when things go south. No, I would not claim that I would have been able to draw my weapon and stop Cho before he killed anyone. That’s just macho posturing. But I carry a 9mm pistol - the same calibre weapon he used to kill most of the 32 he murdered. I *might* have had a chance, if everything had gone just right. Maybe only a small chance - but that would have been more of a chance than the poor bastards who didn’t have that option open to them had.

Yeah, there are no easy or simple answers. I am willing to consider possible solutions - but we have to consider the entire issue completely and make a rational decision, not one based on the immediate emotions following such a horror.

Jim Downey