Category: Life

I got a little pissy with the doctor’s office this morning on a referral. Not hugely so. Just enough to let them know this was not a routine matter.

Upshot is, they got the referral done. They called the other doctor, and he’s going to get my mom in at 4 pm today for Botox. This is still a hail mary pass, but it’s the first time something has gone right in a few weeks. So I am happy.

Mom can barely suction herself anymore. There’s a long shot procedure to use Botox to shut down saliva production. If her doctor has done the referral, and if the ENT specialist will still do it, and if it works, then my mom won’t choke to death in the near future.

I told her and dad today that we’ll need to start with 24 hour care shortly. Either the long shot works, she gets 24 hour care, or she goes into a home (or the 4th choice, choke to death on her own saliva).

I hate to be the bearer of bad news, but time is running out for her to be independent. Running out damn fast.

Both of them are fighting additional help. Mom spent 30 minutes today telling me how the case worker from the agency last week was rude and the caregiver wasn’t bright. I don’t want to get into why she’s wrong, but she is. Definitely not as smooth as the first person we hired, and that wasn’t very smooth.

It’s been a long day. Today was the 80th birthday for my grandmother, and my mom and aunt hosted a party for Gram. The party doubled as a 60th wedding anniversary for my grandparents as well.

The drive down went pretty swimmingly. We took my car because it has angled headrests. Dad drove. I sat behind Mom and flipped the suction device on and off when she needed it.

The ALSA provided a tilting wheelchair for mom to use at the party. Mom used it when she was in my grandparents’ apartment, but we never really were able to get the headrest adjusted to Mom’s satisfaction. That was frustrating. So at the party itself, she used her brace.

This was also the first time in 4½ years that my entire immediate family was in one place. Dan cam and brought Brenda and Victor. Elaine and Brian came. Joe and Sara came. As Sara put it while watching mom walk around with Victor, Your mom is stupid happy to see him.

Drive back was tougher. Mom was worn out. Her ibuprofen wore off, so we had to stop on the way to give her something stronger. Also, the piece of cloth holding her head in place to the headrest kept slipping off. And a muscle in my back cramped up something fierce. But we made it back.

I have about 8 pounds of food left over from catering. Two bags of salmon. One of chicken. One of potatoes. Two of a broccoli salad. Dad has a few bags too. And so does my cousin. They planned for the right amount of people, but it was mostly old folks who ate like birds.

Now, I finish my book and sleep.

Mom’s monthly doctor visit today. Nothing really to report from the visit.

Left arm still going downhill fast.

Tomorrow morning the home health care agency will be coming by to plan. Hopefully we’ll have someone in later this week or early next.

Feeling very fragile lately.

I will be in Seattle for mentoring Thursday and coming back here Friday. It’s the last mentoring for the year. The following week I will be in Seattle over the weekend. I plan to be in Seattle weekends every two weeks.

In other news, Rat’s Reading actually made a profit last month, though not if you count the hours I spend fiddling with it. My hosting costs are $7/month (I think, I pay for two years in advance) on one of the cheap shared hosts. I cleared $17 and change in sales commissions. Probably be a while before that happens again though. Of course, I take the pay in books….

Bleah. My mom is difficult.

She asked me to help dad fill out some medical paperwork today. His shoulder was killing him, so he went to the doctor who referred him to physical therapy. The two offices are next to each other, so he walked next door, got an appointment scheduled and got some paperwork to bring with him. Dad is functionally illiterate. He can’t fill out the forms. Mom did that for him, but she can’t write anymore and communicating to dad what he needs to put in is too hard for her.

So I went through the forms, asked dad the questions, and filled in for him. One set of questions is for family history of illnesses. So for each of them I asked dad if anyone had the illnesses. Dad has eight siblings I think. And his memory for details isn’t the best. On cancer, he knew his mom had breast cancer. But he didn’t remember a sister had it. Or something like that. Mom threw a hissy fit because she remembered and we hadn’t filled out the form correctly. And we didn’t put down the multi-vitamin dad takes under medications. If it is 100% accurate, what’s the point?

When unhooking the feeding tube, the plug popped out and some water with a bit of formula spilled out all over the side of mom’s leg and onto the blanket and chair. Maybe a quarter cup before dad got the plug back in. Dad tried to take mom into the bedroom to get a clean pair of pants on her before he put the blanket in the wash and put a clean one on the chair. Mom threw another hissy fit because she wanted the blanket done first and wanted dad to sponge off the chair which got just a bit on it. By the time mom could get off the chair, the little bit was already soaked in. So no real point.

Mom also doesn’t want to go through an agency to hire CNA help. She figures that the best people aren’t with an agency because agencies take a cut. WHich may be true. But there’s no way I am calling 100 different people from a list of independents. If there is someone recommended, I will call them. But I have no way to vet a large list.

My broker recommended an investment strategy for my mom that lets her estate basically get free money when she dies. Mom likes it. But rather than have my broker handle it, mom wants me to open an account with a discount brokerage and do all of it myself. I know the basics of the strategy, and can probably do it. But I haven’t done it before and have to muddle my way through all the details.

It’s hard enough to do take care of all the things I do take care of. Having her argue with everything and want to do everything the difficult way is getting really tough. I’m burnt out, and the really hard part of her illness is just starting.

I flew kites with my mom yesterday.

I have two pounds to lose in two weeks. I think I’m pretty close.

I won’t be in Seattle next week. No mentoring. I will be tomorrow. And Friday. Applications for Phil time on Friday may be submitted in comments.

Two weeks from tomorrow is the last mentoring day for the school year. After that I will be driving to Seattle even less. I’ll come to any cool kid parties to which I get invited, but otherwise will be staying here more to help mom and to save gas money.

Mom can’t raise her left arm above her head anymore, and she is swiftly losing strength in her hand. I’m guessing she has about a month left of the ability to type. Could be more. Could be less. I’m looking at switches tomorrow. She’ll have to use a switch/scan system, which is going to suck.

Talked to an ambulance/cabulance company today about having someone drive mom to Seattle on the 8th rather than us. She gets uncomfortable in the car fairly quickly. He suggested that it would be jut as comfortable if we rented a top of the line Cadillac with extra soft suspension and 10 point seat adjustment. Mom seemed to like that idea.

I will also start calling around to hire in-home help. Dad finally agreed. Mom can’t even go to the bathroom by herself, since she can’t pull down her pants or pull them back up. And soon enough won’t be able to operate her suction machine or turn pages in a book. He’ll be overwhelmed by all the stuff he has to do. So getting someone else to help out is good. I’ll be there to do some of it, but I have a hard enough time seeing my mom deteriorate as it is.

Mom says she’s having a hard time concentrating even at things that really interest her. She’s more or less staying in her easy chair exclusively. She’s using the bipap to assist with her breathing during the day quite frequently now, though she’s trying not to this week because Elaine is visiting.

We have a doctor’s visit on Monday. These have been monthly. I think this will be the last one. After this the doctor will be needing to make a house call (he’s offered), because mom isn’t really up to leaving the house much even now. In a month, unless she’s having a really good day, she’ll be completely wiped out by going in to town.

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.

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.