All was not okay in Oklahoma, and Rich and I realized we could not postpone a trip any longer. With one dose of Moderna administered, we arrived on the scene of chaos that ensues when a fiercely independent aging parent, recently widowed, has been living alone with dementia.
In and out of recognition, we were still someone to her. We established a routine that brought her back a few feet from the precipice on which she teetered. Fed, hydrated, rested, and medicated, we tried to appreciate the time we had together, knowing it might be the last time she will know us. Meanwhile, the task of arranging her care once we would so quickly depart again took up the majority of our energy.
Sundowning was a term I heard – defined as, “restlessness, agitation, irritability, or confusion that can begin or worsen as daylight begins to fade – often just when tired caregivers need a break. Sundowning can continue into the night, making it hard for people with Alzheimer’s to fall asleep and stay in bed.” Indeed. Thank you, internet.
My support system kept telling me that I was awesome, that I was handling things amazingly. I decided I wanted to be mediocre instead of amazing. Can I just be okay in OK?
We took turns to stay sane. When it was my turn, we went for lots of walks. Her feet are as sure as her neural pathways are unsure. We looked at birds in the apple tree, in full bloom when we arrived. She said, “oh I bet they’re making a nest.” And “I like looking at the birds.” Inside, she showed me another window you could see them from. I wonder how many hours she has spent just looking out the window, while she has been forgetting to eat, drink water, sleep.
I think the frequent walks helped her sleep. She had not been walking in her yard like this, though she had unknowingly left her house at 2:00 in the morning a few weeks before, our wake-up call.
By day five I was under enough strain that I felt like I was slipping from myself, but there were butterflies and I trusted the butterflies would save me. Painted lady, orange sulphur, a blue (possibly spring azure), and black swallowtails each made appearances while I wandered with my camera.
One walk was very windy. A turtle was on the lawn beside the lilac bush. I took numerous butterfly walks that day. One swallowtail hunkered down in the lawn, bobbing up and down as the wind went sweeping down the plain. Another I followed into the tall amber waves of grain in the back field, and located it two-thirds of the way down a stem, gripping on for dear life as each stem waved and whipped past its gossamer wings. I tried to take notes on how to ride out the turbulence. Official butterfly of the State of Confusion (and Oklahoma).
A day before we were scheduled to return home, we looked at the assisted living facility her friend had helped us find. No waiting list. Sitting with her in the courtyard gazebo, I tried to help her let go of the worries she can no longer control anyway. Money. Bills. The house. The rock collection. Keeping herself safe. Time to hand all the worries over to us now.
We added another week to our stay.
Eighty-eighth birthday cupcakes. Rich cut up her steak for her before we put her dinner plate on the table. For a lifelong health nut, she really enjoyed the ice cream. She spun her prisms in the kitchen window and we watched the rainbows dance on the ceiling one evening. These little moments of wonder and delight were precious gems in a field of heavy, dark stones.
The next day was beautiful again, so we went for a nice long walk, and looked at some of the rocks sparkling in the sun. I tried to join her reality, use her vocabulary, anything to ease this transition. “Little pieces of God’s creation,” I said of the rocks. “Yes! Exactly,” she said. We talked about the bird songs. The neighbor’s dog. She said, “it’ll be different to live in town…” And it wasn’t even a complaint or a reason against moving. It felt like she was turning this stone over in her mind, moving toward accepting it… “Yes, it will be different for you,” I said, and then we talked about that courtyard where we sat – another little piece of God’s creation.
When she reverted to resistance mode and Rich was on duty, I went back out alone to just sit in the sun with the rocks. They were so pleasingly undemanding.
When a person has dementia it can turn parts of their personality sour, and it can be hard to remember not to take it personally when you’re criticized or snapped at. At lunch one day I tapped out, and took a walk around the whole perimeter of the field with my camera. Breathing in. Breathing out. Meditating on butterflies. Not important. Let it go.
My birthday was not as explosive as its 4-3-21 made it sound. Stale cupcakes were already on hand. Butterflies were a gift. Mom and Dad called me as they were going to bed, and I was just starting my video call with Quinn so I put them on speaker and they all got to talk, Rich sitting nearby, and the sketchy internet wasn’t even a butthead during this best twenty minutes of my birthday. Quinn is reading an owl book I gave him and described the way flammulated owls can throw their voice to make it seem like they’re distant when they’re close, or make it seem like they are flying from the opposite direction.
It had been such a disoriented day for Nancy, as she had attempted to spend the night before at her friend’s place and had not slept. She told us three times in a row, almost without a gap in between, “there was a bird that would sit on the top of the post and when I would open the door it would talk to me. And I’d whistle to it, and it would whistle back.”
On Easter Sunday morning, five scissor-tailed flycatchers, state bird of Oklahoma, displayed their tails proudly in the yard. We went to church and then to a backyard family barbecue. She wanted to take a walk when we got home, and the day was still balmy. We took three laps, and the first two she checked to see if we had any mail. On Easter Sunday. I just let her check, then asked if she wanted to smell the lilacs.
Each time we would walk beneath the sycamore, bare-limbed but for its seed baubles, she mentioned the branches needed to be picked up. Each day Rich would pick up more, and each day the wind would bring more down.
Another walk around the yard, Nancy and I. “I like it here. It comes down to I just don’t want to go.”
Leaving the lab where she had blood drawn, I said we needed to look closer at the pretty trees planted around the parking lot before we got in the car. Oklahoma redbud, the state tree, in bloom everywhere, painting the landscape red violet. State bird, butterfly, and tree, check, check, and check.
We woke up to rain on the day we moved her into her new home. The rain felt appropriate as I googled how one signs a check as Power of Attorney.
The sun came back. The next morning a rabbit was sitting by the shed, cleaning its face with its paws. The bird with the whistling song greeted me from its post when I opened the front door to take out more expired food from the freezer to the trash.
On the airplane, we sat with our hands on each others’ legs, the book Refuge in my lap, as I read about birds and mortality and mothers, flying the friendly skies.
A bird flew through the B concourse of the Denver airport during our layover…
On our drive home from Eugene the sun beamed down over the coast range, lighting up our destination to the west.
It feels good to be home.
a splash of color on monday morning
a photo study documenting the colors of the spectrum: the balance points between light reflected and light absorbed
