I spent last week with mom and dad for mom’s St. Patrick’s day birthday week. We had a fantastic time! We went dancing and their neighbors taught me the two-step and how to line dance. We went to Assisted Living The Musical, to a friend’s choral concert, and rocked out one night at the Arizona Opry. We drove up into the mountains for lunch–stopping along the way to look at wildflowers and views. We also hung out with neighbors during several happy hours, made cookies and bars and margaritas for a party, and shopped for necessities. They wore me out.
We’ve been living with mom’s Alzheimer’s diagnosis for 9 years now. For years after the diagnosis, I was terrified. Mostly–it now seems–because I believed my culture’s shallow, distant hype back then about a lot of things. For example, back then I blindly, unquestioningly, believed that:
- Slowing down means falling behind
- Losing our independence means losing our value or worth
- Dropping our filters and inhibitions means embarrassment and loss of dignity
- Letting go of speech means losing our ability to communicate
- Losing our minds means losing our selves
Wow. What a gigantic load of bullshit I allowed my culture to dump into my head unexamined. Fortunately, our family functions like a sea sponge most days now: shit flows in, through us, and right on out the other side…
1. Slowing down means falling behind – this idea is hooey
Slowing down with our parents and each other these last 9 years has meant we’ve all had to let go of a lot of ideas and former selves and old responsibilities. Mom and dad let go of being the always-there-helping-us-all-the-time-in-person family elders they once were. They prioritized themselves for a change: they had to. They moved to a warmer climate. Started playing bingo every Tuesday and dancing every Friday. They started having happy hours with neighbors every other day or so. Started laughing out loud often, and every day, like they did back when they were first married. Recently they started getting and enjoying reading the newspaper every day again. Dad reads the Funnies out loud to mom. It’s beautiful to watch. Between that and the Internet, he’s more up-to-date on current affairs in this country than just about anyone I know–including my always-up-to-date activist friends across Seattle.
Slowing down has unleashed a series of tremendous gifts for Daniel and I too. There is no judgment here about your life choices: everybody’s life and slowing down looks different. This is just what our slowing down looks like…
A year after mom’s diagnosis, I quit my full-time job to finish a degree instead of trying to do both at once like I’d done in the past. Soon after that, I gave up my pursuit of traditional business consulting and instead turned our home into a free community coworking space—embracing a true-for-me idea that community and closer relationships with neighbors were what we/I really needed. Slowing down even further with neighbors regularly in our home, I re-learned about the gift economy and swapping, sharing, re-imagining, and bartering: things I’d completely forgotten as options. Eventually I began writing books, because I finally had time to notice that I’m a writer. We later moved outside the city and slowed down even more. Here I became a poet and Daniel began hosting photography workshops out of our home. This year, we created our first flash nonfiction book, in just 4 weeks, using found-object art and already gathered community stories. We can move like lightening now when the community needs us to. We now have the space/time/ability to respond in a flash to community needs and also the ability to say “No, we can’t be involved with this right now.” All because we slowed down.
2. Losing our independence means losing our value or worth – also hooey
Losing our independence has meant mom and dad growing closer as time goes on. It’s meant a shift to a 55+ community where they have more dear friends—friends available to them round the clock—and within-walking-distance activities and services. Meant sharing cooking and housework responsibilities and bringing in extra help as needed. Meant a traditional dad—inclined to listen to his own voice as decider and leader—learning to listen more closely and becoming more able to intuitively understand what mom needs. He even began listening to his daughters more, too, who have a lot more to offer than he realized before. Our parents matter more to each other, and more to us, and we matter more to them, thanks to Alzheimer’s disease.
Losing our independence has meant my sister and I growing closer as the years pass, instead of farther apart, even though we live three states away from each other and have different interests, goals, and work lives. It’s meant growing closer to our own husbands, and to each other’s husbands, and to our core-circle friends too. It’s meant becoming even more honest with and growing closer to neighbors. And making friends with other care partners: people we can share anything with. Losing our independence has meant a continuous revealing of our interdependence. A continuous revealing of our individual fears, our hidden beliefs and ideas, and our inner selves. Everyone still in our lives today matters more to us now, not less. And for those who’ve stuck with us through our worst, we matter far more now, too.
3. Dropping our filters and inhibitions means embarrassment and loss of dignity – so much hooey
Mom doesn’t remember names anymore. Yet when she spots people she knows she may sprint across the store, or the parking lot, or the yard to greet them. She often embraces people she knows with full-body joy. On occasion, she may even hug somebody she doesn’t know. Each moment I set aside my own uptight concerns about this, something new comes into focus: most people adore being greeted this way. Mom can pull smiles and laughter out of anyone now, including strangers. Many of her neighbors light up when they see her coming, saying “Yay! Here comes my hug!” The rest of us don’t give each other enough credit. She does. She greets people the way I’ve always wished I could: with the full joy and abandon and pureness of spirit of a puppy. Her dignity isn’t lost. If anything, she points out how far the rest of us have to go.
Mom adores singing and can remember a lot more when she does. She sings along during concerts and musicals now—even when nobody else in the audience is singing. Early on, this embarrassed me. Now I join her. I began noticing that often other people start to sing when she does. We mostly go to concerts and musical events now where we’re surrounded by people who see the genius in singing along to life instead of being an audience of silent observers. Places where audience participation isn’t welcome aren’t places we want to be anyway.
Last week while we were sitting in their retirement community’s Jacuzzi one evening, with 7 or 8 other people we didn’t know, mom closed her eyes, cupped her hands, and began slowly lifting and pouring water over her head repeatedly—in pure, un-bothered-by-others bliss at the feel of the warm water on a cool night—as if she was alone in her own bathtub. At first I felt a little embarrassed. I asked her if she was cold and wanted a towel. But she wasn’t cold. She was just doing her own thing and enjoying the moment differently. I made a conscious effort to get over myself and then I just watched. She was beautiful.
Embarrassment is my burden to let go of, not hers. She’s light-years ahead of me. Mom carries with her the wisdom of the Buddha, the Christ, the Woman, and the Child now. In her presence, I learn to let go of my burdens.
4. Letting go of speech means losing the ability to communicate – total crap this one
Much of mom’s spoken language is gone now. She listens most of the time instead of speaking. Answering most questions as an individual is beyond her. When she does speak, it’s usually in short, 1- to 4-word phrases about what’s happening in the present moment.
A traditional way to look at this (in my culture) is to believe that mom needs help with conversation. Dad, Jen, I, and others close to her serve as conversation supporters: interpreting and filling in the blanks in what she’s trying to say. When strangers or neighbors ask questions, she starts by saying a few words, we fill in a sentence or two, she continues adding a few more, and so on. It’s actually really fun most days to communicate together like this. It feels like a game.
Another way to look at this is to see mom as a teacher of listening, collective communication, and even telepathy. She’s training us to be more intuitive, better listeners, better interpreters, more patient, more creative and imaginative, and to experience all communication as a service to a greater whole. She’s also teaching us to sing more often.
I hear mom in my head more than I ever have before. I can be walking on the beach—four states away from her—and still hear her. Whether I’m creating poetry, a grocery list, or working out a problem in my head, she’s with me now. Her voice and her stories live in my head alongside the voice I identify as my own and the voices of my grandmothers. Many people only open to an experience like this after the death of a loved one. Thanks to Alzheimer’s disease, I get to experience many years of this while mom’s still around in person.
I don’t mean to downplay the frustrations of losing the ability to speak. It can be really frustrating. And at the moment I find great joy in noticing that mom can go days and weeks at a time now—here at mid stage—without appearing to be frustrated about this at all. She’s relaxed into the idea of collective communication and listening. She’s satisfied with hugs and smiles and singing and group improvisation. And so am I. I find that 99% of our time together now is about the pure joy of being together.
5. Losing our minds means losing our selves – the biggest hooey of them all
Mom has taught me that wherever the “self” lives, it’s not as rigidly tied to the mind and the brain as I was once certain it was. At her core, wherever that is, mom is a smiling, kind, happy, helpful, funny, singing, honest, occasionally crying, occasionally jealous, yet always generous soul. The most terrifying part about Alzheimer’s disease was the idea that we would be losing the woman we know, love, and recognize entirely—that a disease of the brain would literally erase her from existence bit by bit as we watched, helpless.
This is simply not true for us. If anything, the opposite is true. Alzheimer’s isn’t easy. Yes, and…
Alzheimer’s has wiped away some parts of mom while revealing and giving to us the core of her. Mom was once whip smart and had a great memory, but we didn’t love her for her intellect and her recall. She was an expert planner and record keeper and home keeper and cook, but we didn’t love her for those things either. Our love grew out of a shared recognition that we were free to be our true ourselves together. Our selves were free to join her smiling, kind, happy, helpful, funny, singing, honest, occasionally crying or jealous, yet always generous self. This is still true. In fact, most days, it feels a lot simpler now than it did 10 years ago. Because the disease hasn’t just knocked away some parts of mom: it’s been knocking away parts of me and Jen and dad that didn’t serve us well. We can move from our core selves now and as a collective self now. The days we do are really good days.
I was just in Arizona for mom’s St. Patrick’s Day birthday week. We were standing at a large department-store counter while a woman blew up a bouquet of green balloons for us for a party their neighbors were throwing. I noticed a big Disney princess display full of gifts for girls. I pointed at the display and said “Mom, how’d you like a princess fleece blanket for your birthday?” She smiled, put her arm around me, and said “I don’t need that. You girls are my princesses.” We hugged each other tight then: both perfectly content and oblivious to the clamor of the too-busy department store. We were both completely aware of what a deep gift the other’s presence is. Mom spoke back-to-back complete sentences to me in that moment—the only time she did so during my 5-day visit. I will never forget that gift, that moment. How we pulled ourselves outside of time together.
Thanks to mom’s disease, we’ve become more fully present in the moment together. We notice the tiniest of amazing things now. We’re grateful for the tiniest of things now. Mom is still right here with me, beside me, within me, arm around me. Still fluidly helping me and teaching me, laughingly or silently, often invisibly. We are unbelievably lucky to be living this life, to have each other, and we know it.
We haven’t lost ourselves. We’ve found ourselves together.