Author: Philip Weiss

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.

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.

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.

Mom was unable to type today.

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.