4.7.11

AYNSLEY:
The social work staff thought that since the door to Mom's room is closed all the time, she didn't want them to come in and do their job.

The door is closed all the time because the hallway is bustling: it's noisy with staff and patients, and it smells like food, cleaning supplies or dust, depending on the time of day and what construction they're doing (oh, yes, I may have failed to mention this, but they are installing central air conditioning and drilling throughout the day). Since Mom can't see, her hearing is sensitive, and a noisy hallway is distracting and disruptive. She has always been sensitive to smells (a trait I inherited) and now with the medications and cancer, she's extremely sensitive. So, food or chemical smells are not welcome.

Whenever any nursing or therapy staff come in, they knock and come in. We always greet them politely if we don't know them or warmly if we do, Mom especially. So, I call bullshit on the closed door excuse. I understand that everything in every business is run by human beings, and therefore, imperfect. There are things in my job that I do poorly or neglect completely until someone points it out. But I try not to have BS excuses. I own my mistakes. I respect others who own theirs.

Our nurse practitioner, who I adore, owned the medication miscommunication. She told us she should have included that in her discussion two months ago about what our policy covers and when things expire. Though I suspect that she honestly didn't know-she's been completely forthcoming about everything else. I don't think she overlooked it, I think she simply didn't know. And she owned that and apologized. And now the staff is looking for ways to negotiate with Mom's insurance to see if there are some things Dad can order himself. There may not be, but at least they're trying.

This is all very expensive. I can not even fathom how someone without insurance could handle something like this. It's stressful for my family, but for someone else, it could be completely devastating. I can't imagine having to go through the heartbreak of watching your loved one suffer, then losing your house, or your child's education, or your job on top of everything else. Which reminds me that we have all been so lucky to have our work support us-my boss allows me to work from Seattle and fly back and forth-I could not have asked for a better support system. And we were extremely fortunate (ie, we had crazy connections) to get Mom into such a great facility in the first place. This afternoon when the social workers and nurse practitioner met with Dad and me, someone asked about our family network. But she asked in a funny way: "You don't have much family here, right? How would you manage when Mom went home?" And Dad starts listing: "I have two brothers here, my brother in law is here, my son is here, and we have infinite friends who have all stepped in to help in so many ways. Aynsley's in New York, but that's it." And she sort of regrouped and said that changed things a lot, and we could start being trained to administer medications.

I'm SUPER excited to learn all of that. IVs, catheters, syringes...anytime I can feel useful and give Mom medications that she doesn't gag on is awesome by me.

Mom really felt horrible all day today. She couldn't attend the meeting because she was too nauseous and actually stayed in her room by herself, clutching the call button, for that hour. And when I called a couple of hours later for my daily check in, she was too sick to talk. She just passed on an "I love you" through my dad and continued to try to sleep. I'm glad she doesn't have another chemo treatment for two weeks and hope that she'll be stronger and feel better in a couple of days. The mantra I keep over and over in my head is "quality of life over everything else" and it's so hard to watch her struggle with the chemo side effects. All I can do is choose to believe that a few of these rough days lead to more of the good ones. That may be naive, but that's my choice. I choose to believe in healing, in fighting and in hope.