12.28.10

Today was another completely exhausting day. It started (for me) at 9:15 when Gary roused me from a NyQuil induced deep sleep-the first long sleep I've had in a week. Though I'm sure I needed the 9 hours of rest, I decided the foggy after-effects simply weren't worth it and will be forgoing sleep aids of any kind for the next few days at least. Since I over-slept, I rushed to the hospital in a daze and sort of maintained that frenzy all day.

Mom requested Starbucks oatmeal for breakfast, so I picked that up on the way. She ate nearly a third of it, plus some banana and yogurt-biggest breakfast yet. She then had to have a barium swallow test-she's been having a lot of difficulty swallowing and our fabulous nurse, T, wanted to make sure she wasn't aspirating any of her food-the last thing we need is pneumonia. I didn't get the see the barium test, but it came back good-no food or liquid in the lungs! But she needs to be careful and can only eat soft and cut up foods.

Today, in addition to the barium swallow test, Mom had a radiation treatment and a neurological evaluation. She also had an enormous crowd of visitors in the waiting room that I did a terrible job of screening. I know how much she appreciates all of the support, so I allowed everyone to go back whenever they wanted to. As a result, she got very little rest today and has been exhausted. I told her and my dad tonight that the priority for tomorrow is that she get plenty of good rest and quality naps.

Her vision has continued to deteriorate. She's having a lot of visual hallucinations: a sandwich falling off the wall, drinking straws on her blanket. She's also seeing colors where they aren't and seeing more people in the room than who are there. She thought Ross was Claudia today (and trust me, they look NOTHING alike), and she couldn't tell who I was on several occasions. Her hearing is worse, also. She has some ringing in the ears in addition to some other auditory hallucinations. Nothing too annoying, but we do have to speak clearly and loudly for her to understand us. I should note here that she's completely aware of the hallucinations, even saying at one point that she was hallucinating. She doesn't seem to mind, either; she more takes everything with an "isn't that interesting" attitude.

Sweet things today:

• She LOVED being read her cards, emails and blog posts. PLEASE keep your comments coming-she really enjoys hearing what people have to say and takes comfort in it. She asked me to read the comments again and again as she was trying to drift into a nap this evening.
• I told her all of the people who were in the waiting room, listing at least 12 people at that time. She nodded and said "That's exactly what I need." Mom truly believes in the power of positive thought, prayer, good wishes, mediation, etc. Knowing how many people she has in her corner gives her strength.
• She thanked me on numerous occasions for being here with her, saying she had no idea how people who didn't have help could be in the hospital. When one of the nurses commented how nice it was to have daughters, she nodded and said, "oh, yes. And my son is amazing, too!"

Some of my old, dear friends came to visit today-their presence was so amazing. When I told Mom they were here, she said "You're kidding!" and proceeded to ask in detail about how they were, how their parents were and how friends of their friends were. She remembers everything, it's amazing.

On the agenda for tomorrow:

• She needs to rest and I need to be a good gatekeeper of that. Friends and family coming to the hospital is so wonderful and so much appreciated. If you come, you're very welcome to hang out in the waiting room and maybe see Mom, but Ross, Dad and I have made a pact to be much better about controlling who and when people go into her room. And the nurse told us today that no more than 2 more people should come at a time.
• Radiation treatment and a blood draw. And that's IT for medical procedures (I hope)
• I need to work out! I've been doing a strength training circuit with my parents' little hand weights every other day, but missed it today due to oversleeping. Tomorrow it's either that or a run outside-non negotiable, no matter what time I wake up. I need to remember that I can't be an effective caretaker unless I take care of myself. My dad needs to remember that, too.

As devastating as this illness has been, as rapidly as it's progressed and as much as it's taken away, it hasn't taken any of her mental clarity. I am so lucky to be able to go home at night after telling her how much I love her and know that she understands.