The girl in the turquoise swimsuit runs along the rocks, feet protected in turquoise, cowgirl-looking rubber boots. Red bowl in hand, it appears she is looking for pools in the river. Wonder what she is hunting for? No tadpoles in this river. Scrambling over rocks and downed trees, she is a picture of youthful summer freedom. The red bowl disappears and she grabs a fishing pole, seemingly out of nowhere, it’s pencil thin profile camouflaged on the rocks.
My thoughts go back to my mom and the horrific week she has had, first medicated into a glassy stare with few audible words in her already diminished vocabulary. Alarmed finding her this way, I discuss it with her doctor who suggests one of her meds is stopped. The next day she begins to throw her food, refuses to stand to go to the bathroom, and when offered, throws her remaining meds on the floor. One caregiver, the quiet, gentle, night-time one, manages to give her night-time meds and she blessedly has a few quiet nights.
Tomorrow is the sixteenth anniversary of dad’s death, her husband of 55 years and best friend since she was fifteen, for better or worse. Consciously she does not even know the day of the week, let alone the date. Tomorrow is also the wedding of a beloved private caregiver who has been in her life for 2 years, she has waited a year for this event. Last week she talked excitedly about it. When I told her Tuesday I would be back Saturday to take her she replies, through her mental fog, “I hope I am here”. The longest sentence she said that day. (It is looking doubtful we will be able to take her, but we will try.)
I am startled by the girl in the turquoise swimsuit as she approaches. “Can I pet your dog?” “Yes” I say, but over the rippling river song she does not hear me and repeats the question as she walks up and asks Abby’s name. I ask her if she has caught any fish.
“A little tiny one, a bullhead. It got away. I named it Swish.” She looks at me and laughs self-consciously.
I ask what she was catching in the red bowl. “The bullhead, get it…bowl, bullhead!”
I wasn’t that witty at (I’m guessing) age eleven.
I no longer have a memory of my mom’s voice and personality before Alzheimer’s stole who she was. I wish there were videos, but her pre-digital generation is preserved and documented in precious old brown tone pictures, black and white snapshots, and early Kodak color prints, now faded to muted tones. There is no voice to these images. Soon there will be no voice to the woman she has become, the woman with the diseased brain who dominates my thoughts and pushes memories of the mom I knew out. I try to make choices in her life that honor the choices she made when she could better express herself. I remember her values, her likes and dislikes, I remember for her. Occasionally she remembers too, and those are the precious moments.
I ask this young girl if she fishes often. She says this is the second time and notes that both times it has been when they were camping. I ask her if she has a dog. Yes she says, and tells me the dog’s name. A voice calls her, she yells “What”, and is off running. Apparently her mom is sunbathing on the river rocks around the bend, on the little island formed by tree debris and pillars set in the river.
Mom use to light up when she would see children. She had a friend who brought her young children to visit with “Grandma Ruth”, the little girl would dance for her and mom would talk about it for weeks as though it happened yesterday, because for her it did. But they do not visit anymore. The two adult family homes she has lived in the past six months are not so child-friendly to visit. And mom not always pleasant to be with. Mom has to move, her third move in 6 months. Her behaviors “too disruptive to the other residents”. I will resist “soapboxing” my thoughts about the hypocrisy and cruelty of this “eviction”, everyone in the caregiving business will tell you how moving a person with dementia accelerates the decline. It has been true for her.
The girl in the turquoise swimsuit and her mom take a dunk in the river. Her mom is young, athletic, slender. She wears a turquoise bikini. It will be decades before this young free spirit playing in the river will one day notice her mom is aging, perhaps she too will need to do more for her, picking up the pieces of life her mother drops and can no longer manage, trying her best to respect, support and honor her mother’s own free spirit.
I silently offer a prayer for them as I watch them walk out of the river together. I pray that if that day comes for them, it be in a different world, a new age of compassion, understanding and knowledge, a world where people provide care for the sake of caring, and not focused on profit. A world where Alzheimer’s disease, a cruel, slow way to die, is absent.
Note: it has been hard to write lately, my life fairly consumed by the rapidly changing needs in mom’s life, my own emotions, and exhaustion. I’ve tried to avoid writing about Alzheimer’s disease, there is nothing cheery to say about it. But it touches many lives, not to talk and write about it is like not talking about the elephant in the living room. Taking a rare break for a few hours today, I was still on the phone with caregivers, the doctor ‘s office and pharmacy. The girl in the turquoise swimsuit reminded me there is life beyond Alzheimer’s. For me, but not for mom.
footnote: the morning after I wrote this I received a phone call and text ultimatum from the RN owner of the adult family home where mom lived. At her request, we already had plans to move mom August 1st, but she told me I had to move her immediately or she would send her to an ER. Mom’s life was not in danger, nor was she a danger to anyone else. She just wanted mom out of her house. She said we had one hour to come up with a plan. On a Saturday. Long ferry lines, a long day, 12 hours later we left mom in an unfamiliar room in a strange place, not the room she can move to the 1st. She knows nothing of the who, why, where of this, only that she was put in the car, driven a long way away, and is now around unfamiliar people. They are kind people. She no longer talks with any cohesiveness, so it is hard to know what she thought on this day up upheaval.