ALSA Walk, repeat

I am giving away books for charity near and dear to my heart. My mom was diagnosed with A.L.S. last year. A.L.S. is a progressive degenerative condition where the patient’s nerves slowly (or sometimes relatively quickly) die, leaving them unable to move their arms, legs, or other body parts. One part stops working, then another. The vast majority of patients with it die when the condition hits the muscles that operate the lungs, though some people like Stephen Hawking live for years.

Mom doesn’t have too long left to live (a few weeks to a few months on the optimistic side), but she’s still trying to get donations for the A.L.S. Association (ALSA) Walk to Defeat A.L.S. fundraiser. The ALSA loaned all sorts of equipment for her to be able to continue to live at home rather than in a care facility, and they also sponsor a lot of research into the disease.

Anyway, my contribution is to offer a book to people who donate $20 (I pick the book). Even if you are too poor to give money, please consider reposting or blogging about this. The walk is September 20.

Donate here

Leave your address in the “Note to the walker” section where you want me to send the book. I *do not* get to see your billing address. I do see the “note to the walker.”

Also, if you want to join in, come on up on September 20 at 9 am to Bellingham, and visit my mom’s place for the BBQ afterward. (Please please please RSVP first so we get enough food.)

Make me a stress monkey

I was getting a little stressed this morning because it was taking longer to get out of the house to head to Seattle. Little did I know how minor that would be.

Stopped by mom’s to bring Elaine some books to read, and to see if the new caregiver needed anything.

I arrived and mom and Elaine were fighting. Seems mom had a choking episode and Elaine didnt know what to do. Mom was very short with her about what she should have done. Elaine, of course, is 8½ months pregnant. She’s got hormones running wild. So she broke down.

Then I had a conversation with mom about the caregiver last weekend who I fired. Caregiver called three times yesterday about severance pay. I was not inclined, but giving her something so she’ll go away isn’t the worst thing in the world. But it’s mom’s money, so I needed her okay.

Part of the reason former caregiver was so insistent is that the referral lady has a slight issue at the moment and so former caregiver might not have work for a while. That’s her story anyway. THe little issue is that the guy who went on a shooting spree on I-5 on Wednesday? Her son.

The rumor though is that referral service is pretty spotty about providing work, and likes to shuffle people around.

Which we found out today. New caregiver woman called our new soon to start night caregiver person, not sure why, and in the process found out that night time caregiver person wouldn’t be showing up tonight. Word we get is that referral service asked her to do a different job. They expected daytime caregiver person to work 36 hours. Not that they told her this. No one called to tell us. Daytime caregiver isn’t thrilled at all.

So I called a couple of people, and managed to line up a permanent night time caregiver for weekends. Then called referral service to tell them we heard they’d yanked the person. She said they would have someone out and gave me a song and dance about how her girls like to work in teams of two, so she would really prefer us to hire through them. So much bullshit. See, the daytime caregiver tells us she just signed up with referral service. She’s never worked a job through them ever before. She’s so not impressed either.

The end of it all is that stuff should be lined up. We have coverage again, no thanks to this service.

Other stressful things. While I was there, hospice dropped off some latex gloves. As I carried them over to mom’s chair, she attempted to get up. And then just tilted to the right and started falling. I had only one hand free and hooked her and lifted up with it so her head wouldn’t smack into the corner of the bed. But I couldn’t save the easel with her Dynavox and a billion religious icons. That went over. Luckily nothing broken. But my heart was going just a bit faster.

So yeah, tonight is the first part of my reunion. And I’m a little ball of stress.

How’s your day been so far?

Walk to D’Feet ALS 2008

My mom is organizing a team to raise money for the ALSA again this year. Unfortunately, I won’t be able to match donations like I did last year. I’m keeping up two places, so I gotta watch my pennies. But I am going to offer something: free books.

If you donate $20 or more through the walk page I set up, I will send you a beat-up, well-read, well-loved book of my choice. I suck at writing thank you notes, so you get a book.

Make sure to leave the address I should send the book in the “Comments to the Walker” section of the donation form. I don’t get to see your billing address.

If you can’t donate because of lack of funds, please spread this offer. Or even if you can donate, spread the offer. Mom wants to raise the most money, and this counts toward her team goal.


Within 15 minutes, both Elaine and Dan have let me know they are on their way.

Elaine fixed it so her maternity leave starts early, and she will be having her kid in Bellingham.

Dan will be here for a week starting the 16th.

Mom will be thrilled.

One down, caregiver land

Well, yesterday there was an incident with the weekend caregiver. Turns out she was wrong. She can’t do 3 day shifts with my mom since she needs too much help and doesn’t sleep enough to let the caregiver catnap. So rather than admit this, first she badgered my mom into taking morphine. My mom doesn’t want to be groggy. Turns out on top of being groggy morphine makes my mom think bugs are crawling on her. On top of that, the woman called replacement caregivers to come in yesterday without first calling me or joe. Two huge no-nos.

Tomorrow i have a ton of phone calls to make. So not wanting to do this.

The Green Sheet

Mom signed the green sheet today. This is a huge relief! Basically, the important parts says to, no matter what, do not lay her on her back (that would essentially make it so her lungs don’t work) and no intubation, no tracheostomy, and no ventilator. Basically, they can attempt to revive her only through external methods like an oxygen mask or smelling salts or something like that. (I’m pretty sure smelling salts isn’t something they carry, but I could be wrong.)

A variation of all this was in her advanced health care directive, but it was more nuanced. She already had no ventilator in that, but wanted intubation or possibly even a tracheostomy in some circumstances but not others.

Now it’s pretty cut and dried, and neither she nor anyone else in the family needs to worry about her being put on life support that she never really wanted.

Mom basically has two health care goals right now: die comfortably at home, and to live long enough to see her coming grandchild (he’s due 15 September). Both might not be possible but that’s her ideal.


Mom’s bi-pap machine stopped working this morning. Hospice came out and fixed it later today. That doesn’t really concern me that much. What does concern me is that while mom was laying down, she could barely breathe without the bi-pap. She can breathe if she’s sitting up with her brace on, so that’s what they did til hospice fixed the machine.

I don’t know if that means death is imminent. It seems to me that it’s pretty serious. If mom is asleep and the bi-pap stops working for whatever reason (broken, settings off, power outage), then it could happen. This morning it happened when she was waking up. Or awake already; she didn’t sleep much last night I’m told so she could have just been up anyway.

Does it mean she doesn’t have long to be able to breathe even with the bi-pap? I don’t know.

I’m pretty sure that it does mean that if paramedics are called or she is at the hospital for some reason, her breathing is at the point where they will put her on a ventilator. She doesn’t want ventilation, but she won’t sign the simple health care directive that hospice has. She still wants everyone to read and follow the advanced health care directive, which I know won’t be used by paramedics and probably not by the E.R.

I’m not too upset at this point. Even after I found out this happened I decided to go have coffee and hang out at the Black Drop before visiting mom today. I only was bothered when I was trying to decide whether to tell Gram and Gramps. I won’t. Not yet. But thinking that I may have to call them soon and tell them to visit for their last time got me teary for a bit. I did tell my siblings.


I really don’t want this journal to become a chronology of despair, but for some reason I want to have a record of mom’s decline.

This week has been hell.

After having one person flake on us, I got some more references and called more people. Two of them came over on Wednesday; we hired one to complement the existing caregiver, so now mom will have coverage Monday through Thursday.

The one who was supposed to show up today to meet mom never showed. Unfortunately, I didn’t put names on my numbers so I wasn’t sure which number to call to check on her. I may have called the wrong person (no name on their voice mail), but I did leave a message. Something weird with my phone where my call log seems to be missing some entries.

So now I have to get more numbers.

Part of the stress was that I wanted to be in Seattle for Melissa’s wedding today. So I was trying to get a lot of stuff done. I first schedule the interview for 3:30 which would have meant I couldn’t get to the wedding. When I realized it I called her back and re-scheduled to 1. (That outgoing call I can’t find in my log…)

I bought my mom a used tablet PC that we can use to play audio books from Audible (among other things). I spent about 20 hours setting that thing up. Unfortunately, mom can’t operate it right now. The screen is too far away for her to read unless she has it on her lap. And when it’s on her lap she can’t operate the trackball with her feet. Retha can play the books for her for now, but it’s still a huge disappointment. I’ll look up some swing-arm things and get Joe to tinkering. It may not ever come together though.

About the only way mom seems comfortable the last few days is if she has the bipap machine on. Otherwise she starts choking on her saliva within about 3 minutes. She can’t suction herself. Retha does an okay job, but mom can’t tell her where the saliva is pooling so it’s hard. I told mom she should reconsider the medications she rejected because they would dry her eyes. At the time, saliva was more an inconvenience than it is now. Now it’s life or death, and a miserable life too.

Watching her choking off and on for 2 hours was pretty wrenching.

Her brace no longer fits either.

In other news

Starting shortly, mom will have 24 hour caregivers. I’ve got Monday through Thursday covered, and am working on Friday through Sunday coverage.

Dad is not thrilled. I don’t blame him. There will be someone he barely knows in his house 24 hours a day. That’s a tough nut to swallow.

It’s really pretty wrenching to see my mom now. It’s not just that she has almost no use of her hands. It’s more. I can’t really put into words how weak she is without writing a novel, and I’m not in the mood for it.