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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.

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9 comments or Leave a comment
the1pony From: the1pony Date: August 9th, 2008 06:18 am (UTC) (Link)
I keep wanting to say something comforting or uplifting... but I don't have the words. I'm sorry.
chiaspod From: chiaspod Date: August 9th, 2008 07:00 am (UTC) (Link)
I'm sorry that you're struggling so, Phil.

Now, you know me and so you know that when I'm faced with discomfort, I try to fix problems. So while your struggles are in my thoughts and my wishes are that things could be easier for you, I'm going to focus on the fixable.

The tablet and the trackball ... when you say "she can't operate the trackball with her feet," do you mean she's not capable of it, or that there's a mechanical issue (cord's too short, etc.)?
gkr From: gkr Date: August 9th, 2008 03:23 pm (UTC) (Link)
Meaning when she's sitting in the chair, her position looks something like this:


If the tablet is sitting on her lap, whenever he moves her feet to use the trackball the tablet moves. I need to find some sort of lapdesk like thing that can sit on the arms of the chair and allow her to move her legs freely. Or a swing-arm assembly. Something where the tablet isn't on her lap.

It's not actually a problem with her feet or the trackball. It's all positioning.
evillinn From: evillinn Date: August 9th, 2008 07:40 am (UTC) (Link)
I'm sorry. I feel stupid every time I find myself so short on words, but I keep wanting to reply so you know we're reading and listening.

I hope your mom, you and the rest of your family are able to find moments of comfort wherever possible.
malackey From: malackey Date: August 9th, 2008 07:46 am (UTC) (Link)
I'm sorry.

You're so amazing, and brave, for being as supportive and involved as you are. Your parents are lucky to have you. You're in my thoughts.
webcowgirl From: webcowgirl Date: August 9th, 2008 09:43 am (UTC) (Link)
I'm sorry about this, not like there's too much to say that wouldn't be better expressed in person.

I'm not sorry about you writing this, even if it's extremely sad. Please keep doing it.
gargoylettelc From: gargoylettelc Date: August 9th, 2008 05:19 pm (UTC) (Link)
It was nice seeing you out last night. All I can do is give the virtual *hug*. That's all I got.
betanoir From: betanoir Date: August 9th, 2008 05:35 pm (UTC) (Link)
I'm sorry. I can't even imagine how horrible and devastating this must be for you to deal with. I'm just so sorry.
sirensanssmile From: sirensanssmile Date: August 10th, 2008 08:33 pm (UTC) (Link)
You are so strong and brave. I admire you greatly for your courage.
9 comments or Leave a comment