Mom doesn't look back anymore. For most of her life, my mother always looked back. It was just a given that when Mom and I finished visiting, we would be waving out the door, from the car, down the street. My sister and I always felt compelled to turn back and wave after visiting her until she was out of sight. Before she boarded any plane she would demonstrate her horizontal wave to us so we would distinguish hers from all the other typical waves she imagined other passengers would use. Marti, my sister once noted that everyone in the terminal was waving at our Mom. She was right. "There’s Johnny! He's right there, sixth window waving at us." The horizontal wave.
Mom would always look back even in less literal ways, giving us advice she received growing up from her parents, advice they heard when they were growing up in Meiji Japan. Those are not easy standards to hold! "When can I date, Mom?" I asked as a ninth grader, 15 years old.
"Oh, 21 sounds about right."
"21!. I won't even know Kenny Saylor then. I'll be graduating from college! Have my first job! Jeez!"
Today, as I left Southtowne, a care home for people with memory loss, I automatically turned around to wave at my mother, but she was already walking to lunch, holding Katrina’s hands, looking straight ahead, our visit already forgotten. I turned back and walked through the door, by myself, alone.
I know what people say about dementia, that it is a deterioration of the brain. But I have learned that my mother cannot be defined by a state of deterioration. She is in the state of the moment. Her eyes are filled with Now.
When we take a joyride, which we do once or twice a day, we don’t talk about what happened that day. She talks about the trees -- the pointed one, the yellow one, the dark one, that one that seems to need tending, another one that seems like it doesn’t know what it’s supposed to do, the one someone needs to organize.
Mom once called me Auntie. I thought she was forgetting me. I asked, “Do you know my name, Mom?”
“Of course I do!” she snapped. “You’re Donna! My Number One.” (I am firstborn.) Then she went on, “ But you’re not a daughter. You’re an auntie now.”
That was an Aha Moment for me; as the roles changed, the familial positions shifted. For the Now, I am my mother’s auntie. Of course, most days she still refers to me as daughter, and to herself as mother. But that one moment was a moment of clarity not confusion. I must give her credit.
I am happy for two things. First, I am grateful to be that daughter whose visits are welcomed each day whenever I walk in to Southtowne, the fun person who’s come to take mom on a joyride, or take her to my home to cook some Japanese food, or walk with her up and down the grocery aisles looking at the pretty displays or in the summer to the nurseries to look at plants, daughter-like things to do.
I had entertained such high hopes about Mom living with us when we fixed up the bedroom for her in our home. I sewed and painted so it would be more her style, elegant and mahogany, rather than my style. My Winnemem brother, Mark Franco hit it on the nose when he first came to our house. He sank into a chair in the living room, looked around and said, “Hmmmmmm. Retro-hippy-Japanese!”
Mom collected elephants and was proud of her collection. Will put up a decorative shelf close to the ceiling spanning one wall, and we placed her 300 elephants of all sizes and colors into a dramatic display. When mom first walked into her new room, she looked up at her elephants and demanded, “What’s that?”
“Your elephant collection, Mom. It all fits. Doesn’t it look nice?”
She put her hands on her hips, paused and said wryly, “Elephant collection, huh. I must have been crazy!”
Collecting elephants are not the only thing mom left behind that day. I had imagined the two of us going to the community potlucks, hanging out to the Longhouse, at Obon, learning Japanese craft and cooking class, shopping at the dollar store, sunning ourselves in the garden, eating out, all the things she loved to do. I had assured my sister Marti that since I’m retired Mom could easily live with us because mom and I could do all these things together. All my friends had no problem with dementia. She’d have fun. It would be fine for mom to move in.
My sister had been told by the assisted living staff that we needed to think of a better placement for our mother. She had loved it there at Horton Plaza, blossoming under their independent living for active elders philosophy. Mom was the designated event photographer for Hortons, had wonderful joyrides around local sites, went on cruises to Alaska, to China, had a first real best friend with whom she spent every moment, planning the day, eating together in the fancy dining room, restaurant style, gossiping on the phone at night after they both had gone to their separate studio apartments. But when the time came that Mom needed more care, I thought our home would be a perfect fit. That was not the case.
Mom became very anxious in groups and crowds. She felt she had to fix things but there was nothing to fix. As for living with us, just the two of us, she would become distraught because she thought she needed to be “with the elderlies.” She would look all over the house for her “elderlies.” In order to sleep through the night, we installed gates all around to keep her from exiting the house or into the kitchen. This wonderful creative cook who showed her love by cooking -- Bonny Butter Cake, cream puffs, donuts, huge popcorn and peanut balls -- was no longer safe in a kitchen. There was nothing in my DNA that allowed me to consider putting our mom in a facility, a “home.” Even if we witnessed how happy our mom was at the elderly day care center and that she was listless and searching at home, we kept revamping our home and continued bossing her to keep her safe. We all felt trapped.
As “nighttime naughtiness” amped up, (hard as it was for her to climb stairs in the day, she could climb over those baby safety gates at night), Will and I suffered serious sleep deprivation. Our bodies will demand our attention eventually if we don’t listen. After five months of very little sleep, my forehead and around my eyes rashed out with eczema. Every morning when I brushed my teeth, a red masked raccoon stared back from the mirror reminding me, “Hey!!! Your body is in stress! Do something! Now!” The blood tests indicated I was allergic to almost everything, even soy. According to my naturopath, the immune system had become compromised.
My family convinced us of something we already knew. This was not working. When I look back on that time, I wish that I had understood with clarity what was right for mom rather than thinking as a guilty child would. “You can’t put your mom in a home, you selfish ingrate!”
The answer was so sane and so easy. It made sense that Mom deserves to live in a place where she could be who she is, an elder with dementia. She deserves to live somewhere where she can go anywhere she wants, and it will be safe. She deserves to sleep when she wants to sleep and if she decides she doesn’t want to there’s a caregiver who will play miniature golf with her at 3 in the morning. She deserves to be the mom rather than a captive of a bossy mess of a daughter even if the bossing may have been for her own good.
And as for the easy part? Mom always asked, “When am I going home?” when she lived at us. That was her mantra. “Where are the elderlies? When am I going home?” So after my sister and my brother-in-law, bless them forever, did all the paperwork necessary, after I attended all the interviews and tours, we chose Southtowne, five minutes from home.
By November, exactly one year from when she moved to our home, everything was ready at Southtowne. One day, she asked, “When am I going home?”
“I can take you now if you want, Mom,” was my answer.
Without a look of surprise, without asking one question, she held my hand and we walked to the car, drove five blocks and walked in to Southtowne for the first time, together. “Hi, Mary!” she was greeted by staff members.
As she waved to them, I took her to her room. Hers was the twin bed closest to the door with the most wall space. She looked at the framed pictures of her father and mother, a family portrait of us. She looked down at the light green quilted bedspread sprinkled with tiny pink roses, the pink pillow crocheted by Obachan. A bed stand, part of her mahogany set, stood by her bed, a mirror for lipstick, a lamp. She spied the big laminated poster that hung above her bed. It was her baby picture blown up for her special 80th birthday party when we took mom home to Idaho for a big celebration with the whole family and her Nisei friends. We all scrawled our birthday wishes on the baby picture with the gold marker. As my sister told me before, “Mom always knows she is in the right place when she sees her baby picture.” Just as my sister said, Mom pointed at the poster, and said proudly “There I am when I was a baby.”
I hung her coat in the closet. Her clothes were lined up neatly on hangers. They reminded me of the day I started to write her name on all her clothes, socks, hats, underwear, everything, with permanent marker. It took me weeks to get up the nerve to do it and I cried as I wrote “JOO” on clothing where it couldn’t be seen. It seemed so wrong to me at the time.
We went out into the main room. Easy chairs were placed in arrangements meant for socializing. In the corner was a big grand piano. Mom loves music. Mom was welcomed that day to eat in the “special room” for people who still are able to socialize. Everyone else ate in the dining hall sitting at long church tables, their food served on cafeteria trays. Some sat at curved tables around a caregiver who fed each them, one after another.
My mom sat down at one of the three round tables welcomed by the other elders who ate in the special room. I said as I started to take my leave, “I’ll come see you later today, Mom.”
She waved me off and said gaily, “OhKaaaay.”
She was home, at last, with her “elderlies.”
That day, I became her daughter once again and gladly let my jailer duties go. I visit a couple of times every day. Before Mom’s appetite diminished, we would have meals together at our home, Japanese food, special desserts. We go on joyrides every day. We go to events she could handle for as long as she cares to be there. We go shopping. When I have to be someplace for a few days, then Marti drives up to be with her. Mom's special treat is when her sister Grace flies in from Idaho and Marti drives up. That is a family time that satisfies, a houseful.
The elephants are gone. All the things mom stockpiled are gone. The gates are gone. Family living as we once understood it is gone. But none of that left a vacuum.
You see, my mother’s eyes are filled with trees nowadays. Some days she trills like a small bird and tweets a sharp surprise when startled. Some days she’s a worker herself and joins the caregivers, placing her hands gently on someone’s cheek, murmuring comfort. Some days she greets everyone, shaking their hands as she passes them like a politician running for office, and for Jose, a tall young caregiver with a beautiful smile, who treats her like an auntie, she holds out her arms, walks toward him, puts her hands, one on each side of his belly, and leans to give it a quick little kiss while he blushes and laughs out loud.
These days, my mom doesn’t look back and just looks straight ahead, one step, in the Now.
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