Author: Philip Weiss

Last days

I will be mostly offline for the next few days.

I don’t really know what to write here. Mom does not have long to live and I’ve probably heard my last communication from her. She took a turn for the worst last night.

Please go hug someone you love. Just in case.

Instead of LJ condolences or *hugs* or whatever, please tell me a happy story. Something real and happy from your life.

Walk to Defeat ALS

Well, mom’s team broke $10,000 in this year’s Walk to Defeat ALS.

Thank you to Deirdre, Tara and Amber for reposting my donation pitch. Thank you to Erin for coming up to the walk. Thank you to the people who donated; books will be on their way in a couple of weeks.

Mom had a good time visiting with folks. Jason sprained his ankle. Erin got to hold Nicholas. I have some leftover burgers. All in all a decent Saturday.

My day as a caregiver

No caregiver this morning. The daytime person has been sick this week. Dad and Elaine covered on Monday. Had a substitute caregiver Tuesday. She also worked yesterday morning. And this afternoon. But she couldn’t work this morning. So I went over around 7:30 to back up dad. He went to the ALS support group at 11:30 after which he planned to see Elaine at the maternity ward, so I was alone with mom from then until 2:30 when the caregiver arrived.

Being a caregiver freaks me out. Particularly because mom loses it sometimes when things don’t go right. And since I don’t have any practice things have a good chance of not going right. On the other hand, I’m not too bad at it. I’m very attentive, and I talk her through everything. Additionally, I DO NOT want to be taking my mom to the bathroom or dressing her. a) it’s seeing my mom at her most vulnerable. b) bodily fluids. Also, not so much with the bathroom thing, but I hate suctioning her. I hate jamming a tube down her throat so far she should gag. The fact that she hasn’t had a glass of water or a really thorough mouth cleaning in a few months means her mouth smells and it makes me want to gag. She’s had her teeth and throat and tongue swabbed, but her jaw can’t be pried open to really go in there.

Mom mostly slept in the morning, so I actually finished a book. I set her up with the tablet PC in her chair with the trackball (she uses her feet) and she played games most of the time I was with her. I got a fair amount read then too, but I had to pay attention since we don’t have voice software on the tablet. Her signal for me was to take her foot off the trackball and lay her leg down. That worked pretty well.

Uncle again

Elaine’s water broke at 11 pm last night. Brian, her husband, took her to the hospital, where my nephew was born at 4:52. They called home as soon as possible. Mom is thrilled. Baby will likely be named Nicholas Taylor. They haven’t decided on spelling so the BC hasn’t been filled out/done/made official yet.

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?