Ocean shores day 1

Today is overcast, chilly and a bit breezy. Still it’s relaxing
weather. I’m sitting on the back porch about to read Jhumpa Lahiri’s
“the namesake”.

The deer ate most of the leaves from the bush we chopped down. It was
blocking the dock. Three baby deer (fawns?) And two adults.

Relations with the family have been good. Usually things can get
testy and there is still time. But we’ve stuck to making fun of each
other and they’ve let me mostly hang back. I mostly want to relax
while they are the types to want to do things. I do love them and
this is a nice place to hang.

Jason and Amanda get here tonight. Tomorrow will be a day of doing
stuff I’m sure. He’s better at getting me interested iin
non-relaxing things.

Not reading LJ (this is posted via email) but I am checking the email
and text messages.

Hello Tuesday!

Sometime after noon I was chatting with J. about coming over to help me per my post last night. I was still freaking out over trying to get much figured out, she was volunteering to help. But she had to be somewhere at 2:30 and I wasn’t comprehending how she would have any time to help me. It was somewhere around that point that she mentioned coming over tomorrow, Wednesday, that it all clicked.

What a freaking relief!

I went up to the U-District and had lunch at Rubies. Love that place. Read while I was eating. Bawled. Didn’t get too far while there. Then I headed over to Chocolati and read there. Teared up some, but I wasn’t completely overcome.

Came home around 5, and Lori Dyann stopped by and kept me company for a couple of hours. She played my Playstation 2 while I read. Still teary eyed, but having her here to chat and for me to occasionally watch one of her car races on the TV kept me going. I’ll actually complete a one-through of the book, though without having read the later chapters in depth, by tonight.

Tomorrow I’ll be re-reading some of the important organizing things. And I want to have some points in mind on pros and cons for a discussion with my mom.

While not rigid, it’s a structured plan. You have a group of at least 8 people, and group sizes in the 20s aren’t a bad thing necessarily. Their plan has everyone participating in an opening meeting. Over the course of the illness, the caregiving is suppose to be done in pairs or more except for the most innocuous of stuff. Each week is captained by two people who prepare a schedule of who is doing what over the week from the whole group. Then two different people captain another week. A lot of the other stuff isn’t novel for caregiving, but they organize all of this well. Step by step plans for doing most things, as well as general tips and warnings about anticipated problems. I’m really hoping my mom will go for this, cause I think all of us involved are headed for a burnout really quickly, and we’ve barely started doing anything.

I need help

I’m heading up to Lynden on Thursday to meet with a rep from Dynavox with my mom. I don’t need help with that. But it’s a good time for me to talk about some caregiving stuff with my mom. The patient care coordinator from the ALSA Evergreen Chapter recommended a book called Share the Care (website), suggesting that we organize the people who are caring for mom using the principles this group details. So I want to read the book before I go up there on Thursday. Meaning I need to read it Wednesday (since I finally got hold of it Tuesday). Actually, thinking about it right now I don’t think I can finish it Wednesday given the problem and it probably isn’t necessary to finish by Thursday or figure it out by Thursday. But I’d like to get a good chunk read.

Here’s the problem. I just tried to start the book before going to sleep.

I broke out in tears before finishing the first page.

I am going to make no progress that way.

So I need people to help me by being here, distracting me and comforting me when appropriate, encouraging me, and here’s an important part: leaving me undisturbed when I can focus. That means I really don’t need someone who will just hang out and chatter. Someone who can bring a book, or knitting, or cook, or something else for the periods when I can read without breaking down.

I’ll be calling a few people when I wake up to see if they can help. But anyone who has time I would appreciate.

I might set up at Chocolati on 45th or Victrola on 15th if that’s convenient (plus I can repay your time with a coffee at least). Definitely can’t bounce around other people’s places; need to stick in one place really.

I’m probably going to wake up late (given that it’s nearly 5 at the moment).

Thanks in advance if you can help.


The feeding tube will be put in next Wednesday. I had a lot more trouble understanding my mother today as well.

My stomach feels like it’s dropped out and my arms are kind of dead feeling. My mom is obviously going through much worse, but emotionally I’m being batted around with a 2×4.

I’ve got stuff to do tonight with someone who calms me, so I’m fine for now. I may need someone to come over and hang out tomorrow whilst I clean or putter or go to watch a movie or something.

Skipping work

Tomorrow after work I will be heading up to Lynden to help my mom figure out insurance. This means I cannot work my scheduled shift on Wednesday. As anyone who has worked retail knows, last minute changes to availability are a no-no in retail-land. It’s okay for employers to change your shifts on you anytime up to an including when you are there. But they frown highly on employees changing availability.

Hence, lots of retail folk post requests to trade shifts on break room bulletin boards.

My view on this is that I am not paid enough to manage the scheduling there.

I told my boss today that I won’t be coming in Wednesday and why. He didn’t give me flak about not giving enough notice. He didn’t ask me to find someone to cover my shift. He didn’t threaten my job.

He simply crossed through the 7 – 3:30 notation and wrote instead off.

Now, granted I’m not skipping because I want to go party Wednesday.

Also, starting next week I’ll just be working Tuesdays through Thursdays. This will last until the beginning of June, after which I’ll only be on on-call status. Basically, if the workload gets heavy, they may call me to see if I can come in the next day to pick up some of the overload. Which I won’t expect will happen too often, but it will allow me to keep my employee discount.


I spent the afternoon helping my mom with her Dynavox DV4. It’s a speech device for when her ability to speak goes. At first we couldn’t get into the setup menus. Turns out the people who gave it to her had it set on a 1500 millisecond press time on the touch screen. So you had to touch an item for a second and a half and then wait another second and a half before anything happened. We just weren’t touching icons long enough, so it took us a long time before we were able to set up the device (including lowering the time needed to touch the screen).

One of the set up items was selecting the main screen. Most of them present tiles with icons that you touch to get it to say the word. some icons open sub-menus. And there are folders on the top that get you to different word sets. But my mom kind of liked one that had a full touch screen keyboard at the top with lots of buttons for various words and topics below. No pictures. It was fairly complicated. But we couldn’t figure out how to get that screen to actually say the words. There was no go key like other screens. Eventually though, we figured out that you have to press the rectangle with the typed words in it.

I have the device right now, so I can download the software updates for it. Also, I’m going to try to download other voices or fiddle with the ones that are there to try to get it to sound a bit more like mom.

She’s pretty overwhelmed with everything that’s going on. The person who is going to help coordinate her care isn’t really available for a few more weeks until she’s (the coordinator that is) done with a vacation. Her first A.L.S. clinic visit isn’t scheduled until late June I think, and my mom is trying to get some stuff set up before then because she feels like her symptoms are progressing pretty fast. But if she does visits before her clinic visit, she has to find all the various specialists she needs herself, rather than all in one place at the clinic. And also pay the co-pay for each of them individually.

Her symptoms are getting pretty bad fairly quickly. She’s gone from slurring her words when I first noticed to having a hard time swallowing sometimes. Now she can’t really chew, though she can bite soft food. That was a couple of weeks ago when I took her to Edward Scissorhands. Now she can’t move her lips either, and is having a hard time keeping even soft food going down.

Luckily, she hasn’t yet lost any dexterity in her hands or legs. Though she does get tired very quickly now.

One of the symptoms of A.L.S. is being prone to crying outbursts. So anything emotional tends to set her off. How much is just emotion from being in one of the suckiest situations possible and how much is added by the condition is unknown. But it makes things tough for her to deal with stuff, because she can’t hold off crying until after a conversation. Fine when dealing with loved ones, but when dealing with insurance or doctors or lawyers, it makes the interaction difficult.

She’s asked me to do some research into medicare and medigap insurance and compare that to her current insurance. Her current insurance is pretty good, but it doesn’t cover drugs. A.L.S. makes her eligible for Medicare. She could then use the drug coverage with that. However, she may not be taking drugs too much either. The only drug prescribed for A.L.S. extends lifespan by a couple of months. It also has the possibility of reducing the effect of her symptoms. But the latter is theoretical. She’s thinking about trying the drug out for a couple of months and seeing if it helps. So the question is, is the Medicare drug coverage worth switching, or is it better to stick with her current coverage where she’s already met the deductible for the year, but would have to pay full price for the drug (which she hasn’t decided for sure if she wants to take).

Those of my friends who work in medical billing, if you have any pointers for me I’d appreciate it. I can figure it out, but I’d love to save time.

So I’m going to do some research, then head up to Lynden Tuesday and Wednesday. Some of the decision will need for us to look in detail at her coverage and talk to the companies involved.

I put in my notice at Barnes and Noble two weeks ago. I told them that by the end of May I needed to be more of less off the schedule. (I won’t mind if they keep me on for the occasional shift here or there, but I don’t want anything regular for the time being.) Since most every in receiving has quit recently, they were glad I was able to give them a long time to find more people and be around to train them. Unfortunately, it looks as if I’ll need to accelerate the plan some. I’m scheduled for Wednesday, and they’ll need to deal without me that day. I won’t play the will someone please trade me shifts? game. They don’t pay enough to make that my responsibility. Next week on, they’ll need to schedule me no more than Tues-Thurs until the end of May. And I think I’m being pretty generous with this effort anyway. It’s an at-will state, so I could walk out on a moment’s notice.

I want to be able to spend time with my mom with no encumbrances.


Second opinion in. Mom still has A.L.S.
Edward Scissorhands at the 5th Ave sucked.
Tomorrow’s pie night is going to suck as well.

There were positives to the evening though. Played with Ilsa’s right nipple. Next time I need to pay attention to the left. Watched Lisa dance. Damn that girl has nice legs. Reminisced about old times with Augustine. One of the few people around who knew me back in the day.

Now, to bed. Early rising. Last minute cleaning. Getting pie fixings. Making pie. Waiting for people to arrive.


Plans for today

  • Clean my apartment
  • Dinner with mom
  • Edward Scissorhands with mom

Plans for tomorrow

  • Shop for pie ingredients
  • Make pie
  • Pie Night


I ordered an ALS book and it arrived today. It’s been oddly
comforting reading the information despite the lack of good news
contained therein. Know a lot more what to expect. Still only
halfway through though.

One thing is that ALS patients have to consciously swallow or risk
choking on their own saliva. One treatment that is helpful is Botox
injections into the saliva gland to reduce saliva production.