A Little Life List: When You're In The S***.
Grace, Solace, and the Uncharted Mystery of Alzheimer's.
Little Life Lists are for the complicated, unruly things life throws at us. I encourage you to write your own, too. With coffee. xoxo
This is a list because I need some numbers and sense in our new story. But, this isn’t me pretending that living with someone with Alzheimer’s is easy. There are hard things. And I anticipate harder to come. This list is how I capture what’s been good about these last few days.
It began with a family rupture. Twenty-four hours later, my mother-in-law moved in with us from 3000 km away. Along with her dog. She has Alzheimer’s and says, sometimes, I am lost. She says it in French, too. She’s able to speak three languages, play a killer game of scrabble, and remember her beloved dog, whose name means Flower.
It felt intense. Overwhelming. Knee-deep, thigh-deep, head underneath. So many things to deal with, a vast list of to-dos. Dog shit on the downstairs rug. Washing the sheets. Waking at night to reassure my mother-in-law that she is safe. Showing her the way to her room. Checking her medication. Speaking to my partner over the heads of our children. Asking them how they’re doing. More dog shit on the rug.
And yet.
One: We are very present. My mother-in-law allowed me to help her bathe. She leaned back, her eyes closed like a cat with pleasure in the sun while I poured warm water over her hair. Questions about tomorrow or earlier are impossible. We have no goals or plans when she and I are together. Instead we talk about what we see, hear, touch, smell, taste. These are the details my son and I learned in an online workshop about anxiety. At night, when he’s afraid, we inhabit our senses to find presence.
I’ve struggled with presence for most of my life. This experience holds that to the light. We can only be here.
Two: Writing is solace. When I don’t write, I’m edgy and irritable. Even in the few days that this new living situation has become, I have to carve a space for writing. I don’t know what that looks like in my new family circumstance, but in this moment it looks like writing while my family swirls around me, writing this for you. Connecting through words.
My to-do list is long, ever longer by the day, and I operate with goals and aims. I give myself dates for these, like a date when I want to finish the next draft of my novel. I’m leaning into the wisdom of
’s recent post about how she writes:Make space, not time
A book takes space, and not time. You need to make room for it, but it shrivels under any goals that are too specific. I’ve learned over decades (and this is still very much a work in progress) that you need to divorce yourself from the mentality of an office worker, and instead think about creating space in which books can weave themselves. This might mean blocking out mornings to write, but it might also mean always having a notebook to hand so that you can jot down ideas, getting into a habit of writing down your dreams each morning, or concertedly spending more time watching movies rather than TV quiz shows. For me, it means taking a lot of walks. These are the kind of things that make the space for a book to grow by itself, and to become wilder and richer than it would through mere planning.
Three: The feeling is what stays. My mother-in-law can’t remember the details, the day of the week, the conversation we just had. But she knows how it feels. When we fold laundry together because she likes to help, she’s baffled by the socks that don’t have partners; I am too—how do we lose so many socks in the house? Where do they go? A whole other Substack maybe. Tell me if you know.
Later, we play Lose Control on the disobedient speaker while I sing, badly. It doesn’t matter the imperfections of the song or that I don’t know the words. It doesn’t matter that the laundry needs to be put in order later. Whatever. It feels good. And she remembers that, holds it, smiles. It’s grace.
Four: Advice from my mother. She lives with my step-dad who has Alzheimer’s too. She’s a clinical psychologist and she published a paper on what life is like for her. My step-dad published one, too, about what it’s like to have Alzheimer’s when you have worked with the brain your whole life. Both are helpful; beautiful. Read a glimpse here. These lines speak to me:
Elizabeth:
“I had always, when asked, said to carers that they should never give up the day job – never make caregiving your only role in life. This is well evidenced as reducing perspective and being depressogenic. I had begun to slip into this – It was only when I could not stop crying that it became clear that giving up my own interests was just narrowing my life.”
And so, when my friend Sally invited me to her hot-tub on Sunday morning, the complexity of making sure all the people in my house were cared for was big. But then I sat with my girlfriends for an hour, drank quickly, had hugs and turned off the busy and the logistics for a short, gorgeous while.
Five: Drop balls. Not everything needs to be done today.
Six: Moments of unutterable sweetness. This photo perhaps captures everything better than my words can.
Seven: Lost thoughts. Somewhere in the cupboard of my mind, I’ve put a thought, and I can’t find it. My days and nights are distracted, I can’t hold all the ideas, like silver fish they disappear. I’ve written about this before but I still find it hard to watch that flash vanish. But. This is the time we’re in. My mother-in-laws needs her slippers on her feet, her doggie is rushing around with a slipper in her mouth, and writing this thought isn’t possible. It’s gone. Loop back to number five on my list.
Eight: The weathervane, the flight attendant. When my ten-year-old tantrums, my mother-in-law looks to me or my partner for emotional clarity. We stay calm, like a flight attendant on a plane through turbulence. We are the emotional cues, so she can express her emotions safely. We regulate. She can be free. When I’m tired and irritable, I have to find calm. To do that, I need to go back to my mother’s advice. See number four on my list.
My mother says, too, in her article:
“Predicting what needs to be compensated for, without being overbearing, is another new requirement – a balance between stepping in and allowing for a few missteps. As carers have always told us, the role is not for the fainthearted and not easy to get anywhere near right.”
My fourteen year old wrestles with our dog—the one who is sulking, because of the interloper—asking me if she needs feeding. My ten-year-old runs with a soccer ball on the treadmill, to practice dribbling and ease his ADHD symptoms. My eight-year-old and his best friend giggle together and my daughter hides in her room pretending to sleep. We listen to Winter from Vivaldi’s four seasons on the speaker that will not follow my commands. My mother-in-law eats a pancake, drinks coffee, and tells me she’s happy.
In this moment, it’s true. As she faces loss, a huge move, and a devastating illness, she is so very brave.
The sudden change, the rocky road to today, it felt like we were in the shit, but when I make this list, it feels like we can be okay.
We’ve only just begun. We’ve been here forever. Thank you for being here with me.
xoxo
Alice
Share this with someone you know who is navigating a caregiving role if you think it may help. And please share in the comments if you read someone on here who inspires you so I can read them, too.
Reading more: Brene (how do I add an accent on here!) Brown shares her experiences of caregiving here. It’s is what I’m reading next. Also, I’ve connected with some other writers on here who explore this space and I’m looking forward to uncovering their writing and experiences.
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If you’re new here, my name is Alice Kuipers and I’m a writer, mother and dog-owner transplanted twenty years ago to the Canadian prairies from England. I’ve published fourteen books in 36 countries and my writing has been described as: “For storytellers and story lovers,” by Kirkus Reviews; ‘Gorgeous, heart-ripping, important,” by VOYA; and “Intense and wonderful” by Bif Naked. Join me for a coffee break on here. Xoxo
My wish for you is a whole weekend of quiet and lovely.
Care giving is so very very hard, but also can be very beautiful. I’m glad you are writing to make sense of it, and I wholeheartedly recommend having a life away from it as much as you can, too.