Two years ago Mom and I spent the Fourth of July in Telluride, as usual. We sat in chairs on Main Street to watch the parade, went to the town barbecue afterward, drove back to Trout Lake, and returned in the evening for the fireworks. We carried an oxygen tank everywhere with us, because her own breathing was not sufficient at 8,750 feet. She was 85 years old.
The year before that she rode in a car in the parade, waving to the crowd as a veteran. Another year earlier, in 2002, she drove herself from Boulder to Telluride, and at the end of the summer she got lost driving herself back to Boulder.
Last year she wanted to be in Telluride but had just recovered from a week in the hospital after an allergic reaction caused her throat to swell and stopped her breathing. (Sensitivity to drugs is often associated with Lewy Body Disease.) Instead of Telluride, I took her to Denny's, then to my house and in the evening to Marina del Rey for the big fireworks display. She liked it.
Looking back, I realize her thinking was pretty good last Fourth of July. She had lost some memory during her anoxic moments, so she was asking questions like "How's Mother? I haven't visited her lately. And how's Kermit?"
"He died ten years ago," I would tell her. "He died in your arms, remember?"
Each time she was quick to say, "Oh yes, he went to heaven. That's right."
But when I reminded her that her mother had died twenty years ago, she answered, "Why didn't you tell me?"
"You're the one who told me," I would begin, reciting some details of her mother's death and funeral, to her astonishment.
This year she's not thinking about her mother or her husband. When I arrived in her room at 2:30 pm, she was waiting anxiously for me and proud to be dressed in red, white and blue with new heart-shaped stars-and-stripes earrings. Because she was wearing navy blue pants, she began singing a song from her Navy days that has been running through her mind lately:
"Bell-bottomed trousers, coat of Navy blue--
She loved a sailor, and he loved her too."
She's been adding some off-color verses, which I and the caregivers ignore. I think she makes them up, but she's pretty good at rhyming--maybe this song had that potential sixty years ago as well. (Another aspect of Lewy Body is the loss of inhibitions, complex planning, and other frontal temporal lobe functions. )
Today she starts telling me, "Oh, we had fun last night. My friends and I had fun. And in the morning there were babies everywhere."
The caregiver and I ignore this and compliment her on the patriotic colors of her striped shirt with a red overblouse and dark pants.
"She needs a new pair of pants," Meselech tells me. Her Depends have somehow not been in the right position, so urine has soaked through. I find a pair of black slacks and tell her they are Navy blue. She insists on wearing red shoes.
Soon I am wheeling her to the elevator and to the parking garage. I give her an American flag to hold, along with her black beaded purse with a red-hat bead design and with a red, white and blue bandana we will use as a napkin and bib. I'm wearing a white shirt that says "Fourth of July 2004, Telluride" and navy jogging pants. We are a parade and catch the attention of everyone we pass.
At home John helps me get her out of the car and into the house. She is happy to arrive, and I show her that I'm baking cinnamon rolls. She notices some cookies, so I set her up at the kitchen table and give her one with milk; then I give her watermelon, then orange Jello with mandarin oranges.
She wants to go to the bathroom, but I tell her she has to wait until an hour passes since her last trip to the toilet. (After my hysterectomy, I can't easily get her out of the wheelchair, onto the port-a-potty, and back to the wheelchair.)
Meanwhile Ellen and Marie and a cousin have come in and out of the kitchen, and Roz arrives.
"Here's Roz. Roz, say hi to Grandma," I say brightly.
"Mom, cut the show-and-tell voice!" Roz says sharply. "You don't have to yell."
The cinnamon rolls are done, and I give Grandma one, but they did not rise well and aren't very sweet. (Because a doctor just found that Marie has sensitivities to sugar cane and wheat gluten, I tried making these rolls with Splenda and with gluten-free flour. Splenda says "measures cup for cup like sugar, great for cooking and baking," but apparently the yeast weren't impressed. The flour was from potatoes, sorghum, tapioca, garbanza, and fava beans; if I hadn't added a little wheat flour, it wouldn't have risen at all.)
At 4:15 Mom suddenly wraps her remaining half cinnamon roll in her napkin and says it is time to go back. She has been here only one hour.
I had been planning to let her stay for three or four hours and eat a dinner of barbecued chicken with us, because it's the Fourth and I've given her private caregiver the night off. I'm not taking her to see any fireworks--it's too many hours out for her and too hard for me.
Surprised that she wants to go back so soon, I coax her to stay longer and realize she'll never make it to 6 or 7 pm when we will eat. I decide to give her a light dinner now.
"Wouldn't you like a hot dog, Mom? I was going to make you a hot dog."
It's her favorite food these days, so she quickly agrees to stay but then demands the hot dog a minute later and keeps demanding it. I show her the pan where I am frying two hot dogs, but she doesn't understand why I don't give her the hot dog right now.
Meanwhile, she starts singing her song, but I interrupt her and change the subject to prevent any off-color verses.
"I better not sing anything bad
Or my mother will get mad," she sings to song's tune.
"My daughter will get mad," she corrects herself, still singing and looking at me.
"Yes, I will," I warn her.
Ellen, 21 years old, is sitting at the kitchen table too. "Oh, don't worry, Grandma. You can't sing anything that I won't like."
She doesn't know the kinds of things Grandma might sing.
We call my brother Jim, who is in Telluride and reports that the town barbecue was drenched by a thunderstorm. Mom's not interested in Telluride. She tells Jim she's at my house and recites what she's eating.
"These grapes have seeds in them," she tells him, eating another black cherry. "Nuts in them." I'm amazed when she correctly reports the orange Jello with mandarin oranges.
Finally Marie has gone to work, being hostess at a restaurant; Ellen has left to go to a barbecue with a few friends; Roz has driven the cousin back to Malibu. Mom is impatient to return to her assisted living residence.
"Take me back! I don't want to eat any more," she insists. "I just want to go back."
I don't get it. I'm still focused on my plan of giving her some kind of a nice day. I push her wheelchair around the block, but she's irritable and full of complaints when we hit any small bump. She just wants to be back in her quiet, controlled environment.
Then John and I load her back into the front seat of the van, and I drive her back.
I recall how different she is now from a year ago, and I wonder where she will be in her downhill slide next year. Or will she make it to another Fourth of July?
Note to myself: Look at local options for nursing homes. She won't need an elegant assisted living residence much longer. Just peace and quiet.