Breathing

Mom cannot finish more than 2 or 3 pages without nodding off. It means she is losing breathing function a fair amount and there is a buildup of CO2 in her blood. Since she is already on a bipap machine, the only thing that can really improve it is a trach/ventilator or going on oxygen. She decided against both. I made her promise to ask the hospice nurse about her breathing and oxygen levels.

I am starting to feel like this is her last days. I hope hospice can tell. I need to know if I need to get the family here for their last visits or not. Most have visits scheduled between now and the end of June, but I’d hate for them to get here a week too late.

Anyhow, I’m all sorts of fucked up right now.

Plastic Bags at Sea

Danny Westneat at the Seattle Times writes that plastic bags are a tiny fraction of sea trash.

Although the mayor’s press release on the proposed plastic bag fees notes that plastic bags are particularly harmful to marine life as compared with paper bags, the big push is because the bags take up 4% of our landfill.

In other words, Westneat is building up a nice straw man and then knocking it down. It seems like the Seattle Times really doesn’t like the proposed fees. They’ve charged the fees will hurt the poor, and now this. It won’t hurt the poor. The city will be giving out free re-usable bags. The charge will get people to change their behavior. Because of that, they will not be paying this fee enough to hurt them. People respond to economic incentives. This is a conservative way to address a problem. It uses the market and the laws of supply and demand to achieve a needed end.

So get smarter, Seattle Times.

First hospice

Five+ hour visit. Mostly because my mom can’t get to the point. Also, the nurse was 45 minutes late.

Still, it went well.

If you want to know where I get the gene for being difficult, it’s my mom.

The biggest stumbling block today was the green form, or POLST. I can’t remember what that stands for. My mom has a health care directive. She thought long and hard about what she wants and wrote out two pages of instructions for what to do in case she is incapacitated. She wrote this up last summer. The short version of it is she doesn’t want any intervention to prolong her life if her incapacitation is due to her A.L.S. But if it’s something else, like a heart attack or a tree falls on her, she wants the measures.

The green form asks just a few questions: do you want CPR? do you want no resuscitation, limited measures, or to go all out? do you want anti-biotics? do you want tube feeding?

If hospice has to call emergency personnel, they aren’t going to spend 10 minutes parsing the details of her health care directive. My mom doesn’t like the simple form. Why did I write a health care directive then?

Thing is, if she doesn’t select something on the form, hospice provides the maximum intervention.

Daniel Schorr

Quite frequently I catch Daniel Schorr’s commentaries on N.P.R. when I am driving in the afternoon. I’m not a huge fan of All Things Considered, but it’s better than any other news on the radio so I listen. But invariably turn off the radio midway through Daniel Schorr’s commentary. It’s not that he pisses me off. It’s that his commentaries are so bland and devoid of opinion. What’s the point of having an editorial commentary if the opinion espoused is that N.A.T.O. struggles with finding a purpose since the fall of the Soviet Union? Duh.

Lithium and A.L.S.

There’s been a potential breakthrough in A.L.S. treatment. In Italy, doctors gave a number of A.L.S. patients lithium. The results were dramatic. 30% of the control group died within the study period. None of the lithium patients did. They weren’t cured, or even arrested. But they did slow down the progression quite a bit.

A second U.S. based study is under way.

Since lithium is already approved and on the market for other reasons, it’s available to anyone who can wrangle a prescription from their doctor. So lots of A.L.S. patients are doing so, despite any standardized dosing for A.L.S. Many of these people are participating in an unofficial study.

Mom considered going on lithium because she wants to survive long enough to hold my niece/nephew who is due in September. She’s decided against it though because she thinks she’ll last long enough anyway, and doesn’t want to prolong her life. She’s pretty far along and isn’t to thrilled with the thought of prolonging her life in her current level of A.L.S.

I’d probably go on the lithium if it were me. But then, I’d also have made a point to move to Oregon to take advantage of their assisted suicide law as well.

Hospice

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.

Breathing

Mom told me she felt like she needed to use the BiPAP machine last night. Not after going to bed. That’s been normal for 7 months. When she was still up. She didn’t because the thing isn’t very mobile. If she’s feeling like she needs it when she’s up, that’s a very new thing.