Sunday, July 6th

General Observations:

Memory:
She does recognize this house as our home from time to time, but mostly, she just thinks that we are on vacation here (and isn't happy about it). She does remember people without any problem and pets.

Vision:
Her vision is really quite bad right now. She normally wears a pretty strong prescription, but those glasses don't seem to help much at all. She can see big shapes, and can take a hand when one is offered. But in dim light, it seems like she can't see much at all. She feels her way around when she has to.

Balance:
Her balance is better now that her strength is better, but it seems to come and go. But when it goes, she's got no balance at all. Sometimes she can barely stand without having someone hold her there.

Strength:
Leg strength has been coming back since we stopped the steroid. Very rare episodes of sewing machine legs or "quaking" still occur however. She insists on walking even when she's getting tired and losing strength quickly. She will push herself so hard that she ends up having a seizure due to how much energy she is exerting.

Intake:
She is drinking/eating much less these days. Periods of drinking a ton of water or juice, but these are sometimes followed by vomiting. Lots of liquid or some simple movements have caused her to vomit (sitting up after lying down for a long time). We keep trying to get her to move more slowly and don't sit up quite so often, but she never remembers and 2 seconds later, she is sitting up and reaching for something on her bedside table. Food she used to love is not as interesting anymore and sometimes it's hard to find the right thing that she wants to eat. I usually just hand her something to eat without asking what she wants to eat. That sometimes works and sometimes not.

Body:
In the past 2 weeks, she hasn't had that many accidents, and I was about to make a note of that is this blog, when something seemed to change. She has had a few accidents per day now. Even when you try to get her to go, it doesn't seem to help (since she will say NO, she doesn't want/need to go). Getting the undergarments on her is easy, IF she will let you put it on. Sometimes she flat out refuses - even when you know that an accident will happen.

Sleeping:
When she does sleep, she sleeps for very long periods of time and doesn't fidget much. Sometimes, the pain medication seems to come on quite strong and she gets into a really fidgety state. She can't sit or lie still, but to tired to physically move about (but still tries to anyway!)

Pills:
She has a batch of pills that she takes in the morning and another at night. Giving her pills has resulted in vomiting many times, so we have been trying to give her 2 pills, then wait a bit, then a few more, then wait, etc. But with her sleeping so much these days, it can take all day just to get her a.m. meds in her. Some days we don't get a lot of her meds in her.

Episodes:
She keeps having these episodes or mini-seizures. They seems to be triggered by how tired she gets. They range in symptoms, but primarily she loses her body strength and can stay upright. We usually have to get her lying down because she can't sit up. Her eyes stare straight ahead and sometimes her breathing becomes quite labored. She can hear us because I've asked her to squeeze my hand if she can hear me - and she does, but can't speak back. I've also asked her several times if it hurts to squeeze my hand and she doesn't squeeze it - so that's good that it doesn't hurt, but it is scary to watch. Episodes are usually followed by sleep and then she wakes up usually quite refreshed.

Communication:
She can have simple conversations at this point. Usually not ones where she has to think or process much of the words. "Do you want X,Y, Z etc?" just confuses her because her brain has to think about each item to see if she likes/wants it. Many times you will ask her if she's tired and she will say "NO" like she's very angry with you. Then she says "I have to go to BED!" - still angry. She gets irritated with almost any question and usually responds negatively - even if she wants/likes what is being offered. When she's fresh, she talks a bit and you can understand her perfectly. When she starts to get tired, her brain starts saying incorrect words in her sentences. Then, she starts slurring her words and finding it hard to form the words in her mouth/lips. Next comes Klingon - perfectly articulated words, but none that you recognize at all. It's really strange because she thinks that she's speaking normally and you can't understand her.

Humor:
No lack of humor however - watch what you say in front of her!
comments galore! Sarcasm ! No holds barred!



She mostly doesn't realize what is going on, which is good. She's made references to "next year, we will ..." However, she has also said things that seem to say that she knows the end is coming.
How long do we have to stay here?
When are we going to leave?
I'm sick of being sick.

Me too, Susie, Me too.