My mom, step-father, myself, my brother, and a woman from mom’s church met with a representative from hospice last Wednesday.

She was there for 2 hours. We learned very very little that we didn’t already know. The woman was not very organized. Actually, she was organized for a completely different kind of patient. Most people who they meet with have very little idea what hospice does. So she was expecting to explain that. She spent the majority of the time asking each of us what we did for my mom.

She only answered in a general way my mom’s questions, which she didn’t get to ask until nearly the end.

Mom has heard complaint of losing autonomy from other people in her support group. Nothing specific though. The rep answered this concern with of course you get to participate in all decisions. Which is not the answer my mom wanted to hear. She wants to know that she decides. Not that she participates. She came away with the impression that her choice if she disagrees with hospice’s ideas is to go with it or to drop out. Mom doesn’t want a repeat of the debacle that was the ALS clinic at Virginia Mason, where they argued with her over her refusal to take a medication.

A little interlude here. My mom isn’t getting that great of care for her ALS. Her MD is great but he doesn’t have the depth of knowledge in ALS. The situation is not really the fault of the doctors. My mom is choosing this path. She doesn’t want to see the specialists in Seattle. She is fighting hospice. She doesn’t want to go back to her RT. She fought the speech therapist. She doesn’t want an OT to come to the house. In short, she’s being difficult. (She’s not fighting everything though.) Now you know where I get it from. Although I think she’s making some bad choices, they are her choices. I support her right to make bad choices. I will not get in her face about any of them. Gentle persuasion or coaxing is the most I will employ.

She doesn’t want hospice because she doesn’t want to fight them, and she thinks she will have to. The rep didn’t create that impression, her friends in support group did. But the rep didn’t dispel it either. She was unprepared and unorganized, and her coming with a plan to talk about the things most people want to know with no backup just reinforced to my mom that they have a one size fits all way of doing things.

Her only specific concern to me about hospice is that she doesn’t want to take any medication that will sedate her or otherwise dull her awareness. I don’t think hospice will force her to do that, though there’s the possibility they will urge her more than she wants to be urged.

She’s going to ask the complainers at support group for more specifics, so we can clarify with hospice if these are really issues or not. But it’s three and a half weeks until the next meeting.

She says she’ll hire someone to help with grooming/feeding/etc. But she’s balking essentially at the nursing aspect.

Libel and rumors

One of the ways news organizations thread the needle on libel laws is to report what other people say. For instance, Richard Jewell had a horrible time winning in court against newspapers because they reported that police suspected him in the Olympic park bombing in 1996. Which was true. Police did suspect him. Just recently, the New York Time has done something similar to John McCain, a politician I don’t really like. The Times wrote that McCain campaign staffers in 2000 suspected an affair with a lobbyist. Which is probably true. But in both thee cases, the intent of the reporting is not to report that there are rumors. The intent is that just maybe possibly the rumors are true. And there’s little a target can do about it, particularly if they are a public figure like courts ruled Jewell was (I disagree) and McCain obviously is. I think it sucks that news organizations can avoid liability for the harm this causes to the targets. They get to say we didn’t report that this happened. we reported that there’s a rumor. It particularly sucks when the news uses anonymous sources. don’t sue us, sue the people who actually aid it. That is nearly impossible when the sources are anonymous. The mainstream media clams up and says we can’t tell you who it is to sue though we were integral in spreading the libel. There’s something to be said for protecting the media from suit. We want a free media. However, I think we need a way to keep such libels in check. Perhaps open them up to lawsuit with a safe harbor if they report every investigative step they took to verify the truth of the allegations. I.e., if they actually include something like we did X, Y, and Z, and after all that we found no evidence to back up the rumor. Current law allows them only to be sued for failure to check the truth only on first level facts. That needs to be expanded to facts reported by reference for want of a better term. Or perhaps there’s another way. But it’s clear to me that the current limitations allow much more smearing than is healthy.

Hospice & mom update & me update

Tomorrow the family will be meeting together with some of the folks from a local hospice. Meet and greet mostly. Not sure if we’ll be making any definite plans at the meeting. The idea is for the family to get comfortable with the hospice and learn what they do. I read up a ton a year ago, so I don’t think I’ll be surprised by any of their services.

After having accompanied my mom on a number of visits to health care professionals, I’m really un-enamored of the field generally. Most have had a pretty poor bedside manner, despite good intentions. I’m including all operating issues except for the actual medical care in that category. Poor one-on-one communication. Poor follow through. Etc. And it seems like both my mom and I are more knowledgeable on the issues than a number of the ones we’ve seen.

The ones with the worst manner were the folks at the ALS clinic at Virginia Mason, who are also the most knowledgeable. The visits there were stressful for many reasons. There really aren’t any ALS specialists in any field up here.

I do want to publicly note a couple of really helpful folks up here. Dr. Dana Petersen at Lynden Family Medicine, although a general practitioner not knowledgeable about ALS, has done a bang up job getting at least to the level of information my mom knows, and he always takes the extra time to walk us through the pros and cons of the alternatives.

And Tim (can’t remember his last name) at Cascade Prosthetics in Ferndale has been wonderful, patient, and knowledgeable. He’s doing the brace that my mom wears to keep her head up. She can’t make her neck muscles do that anymore. He doesn’t know ALS specifically, but has about a billion ideas to try. I had done some research online into possible braces. I wasn’t too hopeful on any of them, and neither was he. But I didn’t want to leave any stone unturned. He brought out samples of those just to ease my mind. The brace my mom is using is made of plastic, but it is too pliable to hold mom’s head up very far. So he had a technician at their shop add aluminum bracing to it, and it seems to be working so far.

Anyway, that’s a bit of a digression. The point being that all the others have left me a little disappointed at least. So I really really want to meet the hospice folks, because they will be the most important professionals in the final six months. I’m hoping not to be disappointed but scared I will.

Normally, hospice steps in during the last six months. That may not be right now. It may be soon though. At this point it’s too early to tell. Mom cannot eat, drink, or talk. She can’t hold her head up. Her right hand is nearly useless though her right arm still has some function. She’s got some deterioration in the left arm and hand, but that is at least a few months behind the right in progression. That’s actually a bit on the encouraging sign to me. If it doesn’t strike both limbs at the same time, it means consecutive, which means more time in my head. She hasn’t really lost any use of her legs. What is most worrisome to me is she is having more trouble breathing (particularly exhaling). That’s what kills most ALS patients. Whether her breathing problems are the start of the ALS progression in that area, or something else, we don’t know.

I have mixed feelings on all this. I really don’t want her to die. Duh. But given that it’s going to happen as a result of ALS, at some point I want it to go quick. There’s some serious suckage involved with ALS. ALS is not a quick thing, even in the fastest cases. This is not like when Matt died, which was instantaneous. ALS is relatively, though not completely, painless. That’s about the only good part of it. You go progressively more paralyzed. Just as soon as you get things figured out at one stage, you have to redo everything. I don’t remember if I posted this, but my sister is pregnant. I’m hoping that mom lives long enough to be able to hold the kiddo. Due date is in September. Not sure when it’s realistic for him/her to travel to visit. I know that would mean a ton to her to hold him. I just hope it doesn’t suck too much along the way. My mom can, already has, handled a lot.

As for me, you can tell by reading this that I have some really serious grief issues going on. I’m depressed. I’m losing myself in books and light banter with the folks at the Black Drop, an awesome Bellingham coffee shop. All my friends have been awesome. I can’t thank you all enough.

I really wish I had a girl to curl up with who would just tell me everything is going to be okay. There’s been the opportunity, but it was just too hard for me to open up and be vulnerable with women I don’t have with whom I don’t have that existing relationship. (No, I’m not gonna make the grammar in that sentence make more sense.)

I’ve also kind of foregone much contact with all but the closest of friends when I’m in Seattle. That’s been hard, but it’s harder to deal with constantly repeating what’s going on with my mom. I don’t mind telling people, though if I did it might make this all easier. But I hate the repetition. I hate when people argue with me or give me advice I’ve already rejected. Jason says I should just say doing fine and move on cause people really don’t want to know, don’t know how to talk, and really just want that answer anyway. It’s not really my nature though to make okay when I’m not. I may try it his way yet.

My close friends know me well enough to handle me pretty well, so I’ve been sticking to them. Though even then sometimes things aren’t all rosey. I want to yell at them Do I have to explain exactly what I need? Can’t you just know? Which would be bad. There’d be hard feelings. Plus, part of the reason I want people to know exactly what I need is that I really don’t know myself. Really though, these folks have been great. I’m just fucked up.

Things I need to do; can’t say I’ll actually do them though:

  • Try out social activities here.
  • Find a counselor here.
  • Get some exercise.

So yeah, that’s the dump. Doing about as well as can be expected given the situation and the shit I’m not doing that I should.

I love you Joe and Sara.
I love you Deirdre.
I love you Erin.
I love you Kim.
I love you Jason.

I love you mom.

As Stan Lee wrote, ’nuff said. (Hah!)

Clinton vs. Obama: Iraq

When the war in Iraq started, I wasn’t particularly for it or against it. I questioned the need to rush into it, but I do believe that some credible threat would have been needed to force Saddam Husein from power. Eventually. But I do think that the Bush administration rushed into it, and botched the war badly. I’ve read of proposals by Hussein to step down which were discarded. Paul Bremer’s initial management of Iraq pretty much blew it and put us behind the 8-ball for the rest of our engagement.

Obama opposed the war from the start. Clinton voted to authorize it, but wasn’t exactly for it. My views at the time match more closely with Clinton’s, though it’s a stretch to say we agreed. I would not have voted to authorize were I a senator. But I wasn’t exactly against the war either. In retrospect though, despite not agreeing with Obama’s position that we should never go there, his position would have kept us out of this mess.

Both Clinton and Obama want to remove our troops quickly, and in a staged fashion. Obama would keep forces nearby for counter-terrorism. Clinton has said forces might be left in the country for counter-terrorism.

On how to resolve the crisis there, Clinton would convene a group of our allies to propose a solution. Obama would call a convention involving the United Nations to work out a political solution to things like an oil law. Clinton’s plan seems a bit fuzzier on it’s goals, and a little too expansive on its participation.

Overall, the nod on Iraq goes to Obama for me.

Obama vs. Clinton: Immigration

This one should be interesting. I’m not nearly so liberal on the topic as I am in other areas.

Pointing liberal, I am for sanctuary cities, providing services irrespective of immigration status (mostly, see next paragraph) such as fire departments, courts, child health care, schools, etc., and giving driver’s licenses to everyone who passes the tests. I am against English-only laws. In other words, I am liberal on the aspects of immigration that concern human rights.

Pointing conservative, I am against amnesty, against guest-worker programs, and for reducing H1-B visas. In addition, I am philosophically against “green cards” or permanent resident alien status. If folks are coming here to live permanently, they should be here on a citizenship track. Illegal immigrants should not receive welfare or unemployment benefits. In short, I am generally conservative with regard to the economic issues of immigration.

Pointing neither way, I am ambivalent on a border wall/fence. And I am for measured immigration as well as additional funding for the INS (or whatever it’s called today) for processing and handling immigration applications.

On human rights issues of immigration, Obama supports drivers licenses for immigrants, is against English-only and has a muddled position on sanctuary cities. Clinton is against rivers licenses, but matches up with Obama in other respects.

On to economic aspects of immigration. Both are for increasing H1-B visas. Both are for a guest worker program. Both are for crackdowns on employers (not the immigrants themselves) who exploit undocumented workers, though I’m not sure where that leaves them on employers who don’t exploit.

Overall, mostly a wash, with a slight nod to Obama.

Sources for this are: Barack Obama on Immigration, Hillary Clinton on Immigration, Barack Obama’s web site on immigration, and Hilary Clinton’s web site on immigration.

Clinton vs. Obama: Health Care

Both Clinton and Obama are proposing making changes in how we pay for health care. I’d love to see single-payer, but we aren’t going to get that.

The best piece of information I know of regarding their two plans is a blog entry by Paul Krugman. Both candidates propose subsidizing health insurance. Clinton would force people to sign up for insurance, though how people would be forced is not clear. Obama would not. While it is bad for freedom to force people to get health insurance, economically speaking there’s a free rider problem if you don’t. Only sick people would get insurance. Insurance costs would be way up there. Basically, mandated insurance is a tax. Without the tax, it falls apart.

One other big health care issue that I care about is stem cell research. My mother has fairly advanced ALS. She will likely die before stem cells cures could do anything for her. She also is probably against opening up funding for stem cells, as many stem cell lines are the results of abortions. I, however, am strongly in support of opening up stem cell research. I’d hate for anyone to go through my mother’s illness unnecessarily.

Both Clinton and Obama are strongly for opening up stem cell research beyond the limits imposed by the Bush administration.

One thing that has driven up health care costs is the high prices of drugs, imposed through patent monopolies. Dean Baker has proposed that we fund drug innovation differently, rather than through monopolies. I don’t know if that would work well or not, but no candidate will get on board that right now. However, we could import drugs from Canada. We could also allow medicare to negotiate drug prices, which they are currently forbidden from doing.

Both Obama and Clinton have supported these ideas.

Advantage: Clinton.

Obama vs. Clinton: Technology

Net neutrality is the term used to describe a policy where internet service providers and backbone providers may not discriminate based on content. They could charge based on volume, on bandwidth, on service levels, etc, but not on content. In addition, I’d love to see the networks opened up. For along time, DSL was governed by common carrier laws, meaning that they had to lease their lines at wholesale rates. Cable is not a common carrier, and so you could be forced to get bundled services if your internet access came that way. I don’t know the current status of DSL as a common carrier, but I know that the Bush dominated FCC isn’t fond of it. Common carrier status increases broadband use because it puts lots of smaller companies into competition. The wire-line provider doesn’t get to recoup it’s investment by bundling services, it has to charge for the connection on it’s own, essentially. It reduces the barriers to entry for their competitors.

According to C|Net’s technology voter’s guide, both Clinton and Obama support strong Net Neutrality legislation. Neither of them have said anything about common carrier status for DSL or cable. Clinton supports tax incentives to increase broadband use. Obama wants to use the Universal Service Fund to expand broadband.

In the early 1990s, the U.S. opened up patents to software. It’s not a bad idea, in and of itself. If it takes a lot of money to create some sort of new software technology, it makes sense to let the innovator have exclusive use of their invention for a period of years. The problem is that there really isn’t a lot in software that requires patent protection in order to get people to invent the software. If there are 10 companies that are fighting for it anyway, it doesn’t make sense to give the first one just over the filing line the ability to keep anyone else from using the technology for 17 years. On top of that, the Patent office does not have the ability to screen out bad patents in software. Hence, we get patent trolls: companies that get bogus patents for simple easy technology and use legal means to extract rents (look out, economic term) from others.

Obama supports reforming the Patent Office at least, though his web site doesn’t mention changing the patent law for software. Hillary Clinton does not mention patent reform on her site that I can find.

Copyright reform. One of the things that has hurt internet use is the concept of contributory negligence in copyrights. This is what allows record companies to shut down file sharing networks. Rather than sue thousands of users and hundreds of companies, there are other possible solutions that still encourage creativity. For instance, radio can play any song. And when you buy digital tapes (not that anyone does) a small piece of the price you pay goes to record companies to offset possible copying. File sharing applications and networks could charge similarly.

Neither candidate seems to have much of a position on reforming the DMCA or copyright.

Overall, slight advantage to Obama.

Clinton vs. Obama: Iran

This one should be a short comparison. Both Clinton and Obama have been vociferous in their criticism of the Iraq war. However, when it comes to something that may get us into another war, neither of them seem to have a clue.

For a number of years, the Bush administration has hyped a supposed threat of nuclear proportions from Iran. Namely that Iran is actively trying to acquire nuclear weapons with which to attack us. I’m highly skeptical. First, even if they obtain nuclear weapons, I suspect that Iran will turn out something like Pakistan, smart enough not to use them. But beyond that, I haven’t seen any evidence from groups in which I put any stock.

Nevertheless, both Clinton and Obama have used language such as every option should be on the table. I’m very worried that we make it into us vs. them by implying we might use force. This unites Iranians against us, rather than provides support for moderates. Instead, it turns moderates into militants.

Again, a wash between the two candidates.