I talked to the hospice nurse today, who said we could switch to oral morphine or subcutaneous delivered by machine morphine (PCA? Is that what it's called?). I said I was a little worried about doing that, because of my mom's reaction to being given morphine at the hospice care center -- she was convinced they were trying to kill her with the morphine. "Okay," said the nurse. "I'll see if I can work out transport to get her to the doctor's office." If my mom continues to be reasonably unaware of what's going on around her, though, then the machine might be the way to go.
Aunt A said she'd stop by today. It'll be interesting to see (a) if she actually does show up; and (b) what my mom's reaction will be, since their relationship has been strained for a long time. Aunt A basically dropped the ball when it came for helping to care for my grandfather -- A lives in Wilmington, close enough for regular visits at least, but she didn't visit regularly. The final straw was that she didn't get my grandfather a gift for his final birthday, even though she told him she had. He kept bringing it up to my mom, and it hurt her. I honestly don't know the whole story -- only bits of my mom's side of it -- but I don't want A to regret not trying to make amends or to at least be here for my mom now.
The hospice nurse today asked how we were doing with baths.
"I help her wipe off," I said. "But she hasn't had a real bath in a while."
"Do we need to get some help? An aid to come?"
"Yes," I said, relieved. It had been on my list of things to ask about. My mom itches from dry skin, and scratches herself nearly raw. Lotions help some, but baths with lotion would help more. She's also suffering from some incontinence. She only urinates once a day, about, but my brother J and I have to help her get up and get to the toilet, and she doesn't always make it. Baths will make her much more comfortable, and, as J put it, "We could do it, but there are some things we shouldn't do." I couldn't agree more.
"Would that be okay, N?" the nurse asked my mom. Mama smiled a nodded. I honestly don't think she has any idea of what we were talking about.
"We'll get somebody to get you a bath," I said. She nodded.
"Three times a week?" the nurse asked. I nodded.
We have more food. Chicken and dumplings , not cooked-to-a-paste lima beans, homemade brownies. Apparently, this woman is a caterer, and the food actually looks quite edible.
And, as I was writing, Miss G, my mom's closest neighbor, called and said she has soup for us. I sent K & K to pick it up.
Today is SiL K's birthday. She and brother K are going to the North Carolina Zoo tomorrow to celebrate. They took off late Wednesday evening when we thought my mom was at the very end, and K's birthday was nearly lost in the drama. SiL J's mother did -- at a moment's notice -- make an incredibly tasty devil's food cake with cream cheese icing for SiL K. She was, apparently, extremely touched by the gesture.
"Brother K is taking SiL K to the zoo for her birthday," I told Mama this morning, brightly. She looked at me, taking a long moment to focus and figure out what I meant. She nodded.
"I wonder if the giraffes will make K's mouth cold," I said, in the same bright tones I don't even use with children. Mama smiled. "Do you remember when they made my mouth cold?"
"You were running down the hill," she said, demonstrating with her hand. I was five the first time I went to the zoo, and I ran through the tunnel leading from one group of habitats to another. As I came out of the tunnel, I saw the giraffes right there, and I gasped. The giraffes made my mouth cold, Mama, I told her, and my mom, who was 25 years old and beautiful laughed and teased me gently. It's become one of those stories that gets told at any opportunity.
Okay, that bit about hospice having my mom transported on February 4 for her pump refill? Scratch that. Aunt A just called to tell me that she talked to her medical director, and if my mom still needs it, then he will come here to keep my mom from having to travel the 45 miles each way to his office. "He can just refill it while she's there in the bed," A said. "And I'll come just to assist." I'm not sure what A does there -- I thought she was an office manager type person, but who knows. Anyway, if the hospice doesn't cover the cost of the refill, then the director has said he'll just write it off -- not to worry. Sometimes, the kindnesses people show make me cry more than casual cruelties do.
But A likely won't be coming today. "Tomorrow, for sure," she said, "if I don't get out there today." She also assured me that it wouldn't hurt her feelings if it just wasn't a good day for my mom to have visitors or whatever.
My mom hasn't thrown up today. She said she didn't want more ice and Sundrop, but I brought her some anyway, and she's sipping it. She's ... almost childlike. Her snark is gone entirely, and she's willing just to smile, unspeaking, while she swivels. She stares at the television, uncomprehending, but getting comfort from the routine of the Today Show and Judge Judy and the Price is Right and local news and MSNBC and Dr. Phil. The routine anchors her, I think, more than the oddness of having people in and out.
Periodically, I look over at her, and she looks back at me, questioning. "What?" I said. "What?" she repeated. I shook my head. "You were just looking at me -- do you need something?" She shook her head. "Ok," she said, retreating back to her swiveling and watching the television.
Brother J and his wife, SiL J, are going to stay here with me. They have been, since Wednesday night, but I wanted to make sure they were planning to continue. I knocked on James' door early this morning to get his help getting Mama up from the toilet.
"We'd already talked about it," said SiL J. I'm so glad. I can't do this alone, and I also have trouble asking for what I do need. Brother J -- a cop, a fireman, and a recently-certified EMT -- is a far better caregiver than I am.
It's so hard, watching our mom die, and we're each coping in the ways we know how. I mentally plant my feet to keep from running and create a narrative to make sense of everything. K doesn't really know what to do with himself when he's here -- he fidgets. P hides behind a computer, watching surfing videos on youtube with ana's noise canceling headphones. J takes her blood pressure and feels for her distal pulse and consults textbooks, when he's not working on his ISP business and arranging for food to be delivered to our house. We each hold our Mama's hand, and say, "I love you." She echoes us, and we hold on, tight.
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