Tag: a.l.s.

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.

Mom told me today that she’s losing strength in her left thumb.

And she is noticing some differences in her breathing. Subtle differences. But this time she didn’t say she thinks it’s something else like she did last month.

Hospice starts next Tuesday.

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.

My mom owes me a favor big time!

I went over there today, like I do nearly every day. Today she asked me to…

Break the spines on two of her books!

She owes me!

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.

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.

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!)

My mom’s right hand has become not very useful. However, she can still use her arm. So I ordered a trackball for her to use instead of a mouse. Overall she liked it. But it stuck horizontally, so it has to be replaced. The company sent one out, without hassle. It should arrive next week.

The tentative plan is to use the trackball in combination with a foot switch to replace the mouse button.

I took mom to the speech therapist this morning. She was supposed to help us organize the buttons on my mom’s dynavox (her speech device) so she could find them.

But the upshot is that my mom just doesn’t want to use them. It’s too slow, hard, and limiting. She wants to type or write. She’s wordy. Really really wordy. But she can’t type very fast already.

In a few months, she won’t be able to type or write. And she doesn’t want to use any other method. She already can’t use her right hand more than a couple of half hours each day.