My mentor and friend Bernie has been told by doctors that he has a year left to live. Thanks to Bernie, I’m now aware that I—like him—have a choice here. Each new day now, actually, I have this choice: will I choose Bitterness, Sweetness, or Bittersweetness as my companion today? Luckily, thanks to Bernie, I don’t have to face this choice alone anymore.
Bernie has been playing, studying play, learning about play, and writing about play since the 1960s (as an adult, that is—I’m sure kid-Bernie did more than his fair share of playing, he probably drove his folks nuts). It didn’t occur to me until just last week that I should search his ginormous and playful database of deep fun (Deepfun.com) for the word “bitterness.” But then I did. So I did. And I was stunned by what I learned. Which is this…
I learned that playing, studying play, talking about play, thinking about play, and writing about play and deep fun and all the ways in which they manifest themselves around the world is a damn fine way to spend your life. There is a Sweetness in Bernie’s life that shows up in my imagination as a small, slightly goofy, and often mischievous creature sitting just above his right, and sometimes left, shoulder. Sweetness is an angel and a devil combined, the dappled color of a turning fall leaf, and he whispers “Let’s play!” and “Oooo, let’s try that!” and “Come on, let’s go there!” into Bernie’s ear every day. How Bernie spends his time here—the playing and the studying and the talking and wondering and the writing—all these things do a remarkable job of keeping Bitterness from stepping into his life uninvited. All those decades of writing—writing practically every day, WOW—and it’s almost as if Bitterness was listening for places to enter, waiting for just the right moment, but very few Bitterness-warranting moments appeared. So he contentedly sat on his swing, swinging.
You see, in my imagination, Bitterness sits swinging on an old tire swing dangling down from a tree branch, watching Sweetness and Bernie race around the world, and Deepfun.com, like children playing tag at twilight. Bitterness is smiling, watching, patient, and waiting. Bitterness isn’t sinister: more like the introvert kid content and enjoying the solitary swing and happy to have the more rambunctious others just slightly farther away but still in plain view. Bitterness doesn’t need to step in much at all, because clearly Sweetness and Bernie have got this. Because Bernie listens to Sweetness most days, Bitterness knows that Bernie is ok. Bernie invites Sweetness in to play most days, or vice versa. So much so, that they’ve even started to look a little bit like each other. And some days now, I notice, it’s Bernie who is the dappled angel-devil creature sitting on Sweetness’ shoulder, not the other way around. (Bernie also married Rocky, who comes from strong Sweetness-embracing stock. Lucky, lucky Bernie.)
As I wade through his six decades of writing, I notice that Bitterness moved visibly onto the Deepfun.com playground just six times. Go and look and see. And wow. Each time Bitterness stepped in, it was to visibly demonstrate how to invite Bitterness in and how to play with Bitterness. Bitterness, I learned, wants to play too. He’s just different. He’s not Sweetness. Not so easy to play with. Here’s a summary of what I learned. To get the full demonstration, search for “bitterness” yourself on Deepfun.com:
- October 13, 2003. In a post called “The Dancing Referee,” Bernie links to a video where we get to watch a man bring grace and exuberance to the difficult role/job/profession of sports (soccer, in this case) referee. Bernie notices “The officials are there, not to have fun, but to keep the way clear so that fun can be had by others. They allow the players to leave aside concerns about fairness and safety, so that they can focus everything, everything on the game. But refereeing is often a difficult role, one that leads to argument and bitterness, insult and injury. To find a space for joy in all this, to transform yourself from an official to a performer, requires courage and commitment and deep enjoyment. It kind of makes you think that anyone, regardless of role or position or function or job, can find fun, if fun is what that person is ready to find.” He ends by reflecting on a sport that doesn’t require referees (Ultimate Frisbee asks players to be their own referees) and on one that does, saying “To understand fun, we must find ways to celebrate both.” Celebrate both even though I’m not a fan of both? Hmmm. Deep fun, indeed.
- May 13, 2008. In a short post called “Pangea Day,” Bernie shares a link to a movie in which people reimagined a border wall into a volleyball net. Hmm. So Bitterness and fun belong together? Even in the presence of the worst humanity has to offer? Hmmm.
- June 28, 2008. In a post called “Sneaky Fun,” Bernie shares a link to a site designed primarily for people feeling bitter at work. People who work at computers, that is. The site transforms the Internet (a virtual place where people sneak away from tedious real-world work to explore and play) and makes the Internet look like a boring Word document on your monitor, so that you can sneak in a bit of fun under your bosses’ noses. Helping the Bitter at work be a bit naughty? I love it.
- April 25, 2011. In a piece called “Backstory,” Bernie talks about getting overwhelmed by the world and its cruelty and messes. “I want to rant and rail, to make sounds of fury, to bite the bullet of bitterness and spit it in the face of stupidity, in the hands of brutality, in the eyes of cruelty and stuff.” Damn. Wish I’d written that. And he follows that with writing down his own purpose so he can more fully look at it—simultaneously giving the world something better to read about themselves: “I write these posts to help make things a little more fun. That’s exactly, precisely what I’m here for. Fun for me, for you, for anybody who isn’t finding enough light to delight in their days… For me, play is a political act. This is what I truly believe. Playing, celebrating everything with everybody, anybody. It’s as revolutionary as a protest song, as government changing as a rally. For me, fun is healing, is health made manifest. Body health, social health, mental health, soul health.” As he writes, I think to myself “Play is an act of revolution, and clearly I’m all in.” And suddenly the whole world, and Bernie, and I are so beautiful that it makes me cry. Dammit Bernie. When did Sweetness jump onto my shoulder?
- October 20, 2015. In a post called “Elder Fun,” Bernie plays with a distant friend recovering from a stroke, demonstrating how to let go of old patterns of fun to embrace new patterns and deeper fun as we age. Fun and Bitter. Bitter and Fun. Hmmm.
- May 8, 2017. At this point, Bernie and Sweetness are living with the reality that he has less than a year to live in this beautiful, beautiful world of ours. And so am I. After reading his essay, “Play a little, talk a little, play a little, talk a little, play, play, play, talk a lot, play a little more,” (Damn, dude, your headlines just keep getting better) in the comments following the post, a friend describes the piece as “Bittersweet.” After so many years of watching Bernie and Sweetness play together, Bitterness himself, it seems, has been transformed. Finally confident that he will be invited to play, he steps onto Bernie’s own page now, feeling mostly lucky and just a tad regretful, saying “Thank you, friends, you’ve changed me. I’d like to join you in the fun. But please, call me by my true name: Bittersweet.”
And so we welcome Bittersweet into our play—a rag-tag group we are, fond of fools and filled with accidental genius—playing tag and giggling again, as glorious and warm and present now as Twilight herself.
P.S. Speaking of swings and playgrounds, Bernie has gotten a lovely company to donate some really cool swings to his local park, but they need $4,500 for the installation. If you have a little extra money, consider donating it to this most playful of causes. Go here for more details: http://www.deepfun.com/gift-family-community/.
For the past three months, I’ve been an almost daily care partner for our mom, who is moving into late-stage Alzheimer’s disease. Our family has been living with the disease for a decade now. Dad has been caregiving for mom, mostly on his own, for more than a decade (because he saw the disease long before the rest of us did). I am utterly amazed by what he has done. For the past seven weeks, I was with them 24×7 as we travelled across the country and then prepared and sold their home, boat, and trailers. I finally—fully—saw what a toll this is now taking on my dad. I wish that I’d spent this intensive time with them sooner, because there are things I wish I could have helped him do for himself years ago. That said, how about I drop the guilt and just share the beautiful things I’ve learned this month?
1. Scheduling a weekly meeting or call with others like you
Care partners need a place to vent. We need a place where people can completely relate to what we’re going through with insider knowledge, a willingness to listen, and without judgement. We need a safe place to weep. A place to tell our stories of the adventures of Alzheimer’s: many of which are remarkable and amazing and some of which hurt far beyond what we think we can handle. We need this. Period. I don’t care what you have to do. Make this happen.
2. Saying “Yes!” when loved ones freely offer gifts
I learned to do this only this year. Now I see why it took me so long. To this day, as a caregiver, my dad’s go-to response to offers of gifts and help is to say either “You didn’t have to do that.” or “You shouldn’t have done that.” or “No, I’ll do that.” or, my least favorite, “You can’t do that.” (The hell I can’t buddy!) This is not the voice of the man who raised us: the man who accepted our gifts and allowed us to help do everything as kids (as the imperfectly stained fence can still attest). I empathize with wanting things done a certain way: especially in the face of a chaos-generating disease like Alzheimer’s and when your priority is protecting a family member who needs significant quiet, order, and a reliable schedule to reduce the load on their always over-worked brain. And still, from my perspective, learning to say “Yes!” to others, when gifts are offered freely and in love, is among the deepest gifts that attend this disease. Mom is the QUEEN of this. She’s a rock star. To survive as a long-term caregiver, and to thrive as a family, caregivers and care partners also have to become really good at receiving gifts and help.
3. Letting go of people unable to give you the benefit of the doubt right now
The effort required by Alzheimer’s caregivers (especially those who struggle with receiving help) is so intense that I compare it to being caught in the gravitational pull of a black hole. There is no getting away. No down time. All your energy must be directed inward to yourself, immediate-other care partners, and the person with Alzheimer’s. And this can go on for years. This means that you become a very different friend, family member, neighbor, citizen, employee, manager, worker, playmate, life partner, spouse, sibling, gardener, and human being than you used to be.
Your ability to people please, and even to work out small differences, outside your immediate small circle all but vanishes. Communication to the outside world, for example, becomes difficult and often impossible. This can hurt people around you who consider themselves part of your inner circle but who, for a while, must—for your sake—be pushed outside that circle. Some people will turn on you for doing this. Dislike you. Even hate you. They will ascribe the changes in you to all sorts of interesting things—from selfishness to stubbornness to flawed character to greed to arrogance to indifference to not really listening to them. It’s funny. People with ample free time can do a great job at fooling themselves into believing that they can judge, fix, and change other people. We can’t. We cannot suffer these same delusions: we simply don’t have the time and spare energy. Instead, we must let people go. In our case, we’ve let go of a whole lot of people across the last decade. It hurts, I’ve learned, only as long as you fight it. Only as long as you beat yourself up about being unable to fix things that you cannot change. Those who matter to your future will accept you as you are even now, they will either forgive you or see that you don’t need forgiveness, and—I’m learning now—they will find their way back to you eventually. Those who fiercely hang on to you do come back. Those who fiercely hang on to judging, blaming, or trying to change you are most likely gone from your life for good. This hurts. And yet this, too, is a blessing.
4. Recognizing that your pain is their pain
Many people—our mom included—experience a significant increase in empathy living with Alzheimer’s disease year after year. For my mom, at this point, living with the disease doesn’t appear to be the hard part. She accepts all the things she can no longer do. Including, at this point, speaking no more than one or two words at a time. She graciously accepts gifts. Gratefully allows us to help. Loves life most days. The same has become true for me, most days. Right now the hard part for her—and for me and my sister Jen—is watching my dad try to do everything himself, rush, exhaust himself, get frustrated, get angry, and beat himself up emotionally and physically about his own mistakes and completely normal exhaustion-generated human lapses in memory and judgement. When dad is happy, mom is happy. When he hurts, she hurts. When I am happy, Jen is happy. When I hurt, she hurts. Prioritizing ourselves, our health, and our well-being as caregivers and care partners IS how we best serve our loved ones. Neglecting ourselves and our needs hurts not just us: it hurts everyone connected to us.
5. Dropping guilt
Guilt is you carrying a kayak across the desert. You may have needed it in the past for something, true. And you don’t need it anymore. Your family doesn’t need it. Your community doesn’t need it. Certainly the person with Alzheimer’s doesn’t need it. Your guilt is not needed here, care partner. It is unnecessary weight. Let it go. And if you can’t, connect with places, people, and things who help…
6. Opening to nature
What we need in our lives now is more time with people, things, and places that allow us to just be who we are right now, feeling what we feel, as messy as we really are, and that/who show up without a deep need for reciprocity, fairness, correctness, and perfection. We humans may not be great at doing this, but we do at least instinctively turn to nature for help. Here is a partial list of things that are better at allowing us to just be ourselves than most humans are. Increase your contact with one or more of the following things: trees, flowers, dogs, cats, deer, fish, grass, vegetables, fruits, sky, clouds, sunshine, rain, lakes, rivers, oceans, forests, fields, moss, tree stumps, sunsets, sunrises, beaches, rocks, driftwood, soil, seashells, fog, mist, wind, leaves, meadows, birds, music, poetry, art, babies, and puddles. Also, increase your time in spaces that make you feel welcome (from an inviting sunbeam to a soft chair to a neighbor’s front porch). Spend more time in places that make you feel grounded, relaxed, needed, and home (from the presence of a dear friend or sibling to a street or park or forest that you love).
7. Opening to new community
My folks have done a great job of this the last few years, and I think it saved us all a great deal of pain. Open to becoming friends with new people. Different neighbors. Other caregivers who appear to have literally nothing else in common with you beyond caregiving. Talk to random people in stores and restaurants. To friends of friends online (or even strangers if you’re up for it). Delivery people. People in doctors’ offices. People of different ages and energy levels and cultures and backgrounds and previously imagined societal levels. Find authors and characters you’ve never encountered before. People and animals outside your comfort zone. It is these people—this new community—that is integral in helping you survive and thrive as a care partner and as a family. You need them. They save you. And unlike the old you—trapped by old beliefs and ways of thinking—this time you’ll be more fully aware of the fact that these strangers, these new-to-you friends, are saving your life. Co-creating your life. You’ll be more fully grateful for it this time. And, remarkably, in your own gratitude and openness to new community, you will save them in return. Without even trying…
8. Experiencing everyone as a leader
When she’s well rested and feeling supported, our mom makes friends with everyone and everything she meets now. Without even trying. Most days, she couldn’t care less about your size or shape or past or abilities or flaws or political affiliation or gender or age or orientation or beliefs or IQ or planet of origin. In her presence, you are beautiful and perfect as is. If you slow down, and join her in being fully present, it’s easy to see the same in her.
Last week, for example, in the middle of a large family gathering, she left the room for a while and then walked back into the middle of the kitchen wearing only her swimsuit and shoes. She stood smiling at us, waiting patiently, until we offered to join her in the lake. And then we did. And then it was wonderful.
Does it really matter that she can no longer say “I’d like to go swimming now. Will you join me?” Does it really matter that she no longer knows what state we’re in? Or our names? Or her own last name? Mom has become a better leader every year of her life with Alzheimer’s, because she sees everyone around her as a leader too. She is such an amazing gift. In her presence now, we are all leaders. We are all gifts. And we are all helping.
Sympathy is the standard response I receive when I say that our mom has Alzheimer’s disease. If only the world knew how incredibly lucky we really are.
My mom Linda was diagnosed with Alzheimer’s disease by a doctor in 2007. She was just 60 years old. Mom, dad Jim, sister Jen, and I all knew that something was going seriously wrong with Mom for several years before that diagnosis. Memory troubles showed up. Anxiety and depression showed up. All new to her. More significant personality changes, such as not wanting to talk on the phone with us anymore, not wanting to visit Jen and me anymore, not wanting to do many of her favorite things, and avoiding spending time with other family members, friends, and large groups of any kind. She began spinning in worry about simple things, such as spending hours worrying that she would forget to feed the dog at 4 p.m. In those early years, worry spinning began causing her to repeat herself: such as asking me 15 times, in 30 minutes, to make sure she didn’t forget to take a bottle of water into the theater with her.
The more we read about the disease, the more we suspected Mom had Alzheimer’s. Even so, it took us years to finally get her to the doctor for that official diagnosis. She was remarkably sly at avoiding that doctor visit, including cancelling appointments behind Dad’s back: another completely-not-like-her thing to do.
Back then, I was terrified and felt utterly alone. I think we all did. And why wouldn’t we? In my country almost nobody is in a rush to diagnosis this disease: not the people who have the disease, not the people who love them, and not even many of our doctors. As a country, this disease terrifies us.
Fast forward to the fall of 2015.
We are an entirely different being today: a collective being. Reflective and thoughtful. Calm within storms some days. Creator of storms other days. Able to drop worry, stress, fear, ego, and even people, if need be, in the blink of an eye. We’re becoming quite the bad ass together. More fluid and funny too. I’m a creator now: poet and artist in addition to writer and editor. My sister recently became a mom. We even speak a wordless new language now. Speak collectively out of habit. From my perspective today, the difficulties we experienced before are mostly symptoms of trying to tackle change and chaos, and trying to fix unfixable problems, as lone individuals. The result of standing in a river alone and trying to make what is right now back into what used to be. How impossible and exhausting that was.
Some people receive long, healthy individual lives to become something more than they once were. Others, like us, receive and accept diseases like this: diseases that require us to become something new, something different, and something more than individual selves each new day. This disease surfaces our collective selves. Our dragon selves. Our river selves.
So yes, as a dragon/river/human/community hybrid being, this disease doesn’t terrify me now. Not anymore. Even though I myself may end up with it as soon as 10 years from now. Thank you Alzheimer’s.
In August I was sitting outside a coffee shop, in the warm sun, having lunch with a friend who is also an Alzheimer’s care partner. In addition to talking about our marriages, food, the wild world of indie authoring and self-publishing, our mid-life aspirations, and our families, he brought up the subject of euthanasia. We talked about when and if our loved ones might make that choice and when and if we, ourselves, would ever make that choice. I’ve never had this conversation with anyone: not my husband, my parents, or my sister. It was a deep, lovely, moving, weird, and fascinating conversation, woven into and around talk of annoying husband quirks, great new food spots in the area, and the stubborn expansiveness of mid-life waistlines.
As I drove home, I realized that I’d just had yet another amazing, life-affirming conversation that I wouldn’t have been strong enough to have before Alzheimer’s disease entered my life. With a close friend I may not have had without this disease. And, even more amazing, that I’d just spontaneously taken a 4-hour lunch break out of the middle of a glorious, sunny work day. The old Lori would never have done that. Never. Thank you Alzheimer’s.
Our new book, The Grace of Dragons: Receiving the Gifts of Dementia Care Partnering, is another gift of our experience. A gift born of finally learning to slow way down and make time for what matters most. It is a collection of essays and poems that I wrote between 2012 and 2015 — the years my panic about Mom’s disease had subsided enough for me to notice beauty again. Create beauty, anywhere and from within anything. The essays and poems have been grouped in the book by one of the gifts they share in common, out of chronological order, so dates, times, and world events may seem a bit jumbled and confused. That’s ok. In this world, the gifts are the focus. Everything else is background noise.
Thank you Alzheimer’s.
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.
This post is by and for primary and secondary caregivers of someone living with mid-stage Alzheimer’s disease.
We’ve been living with mom’s Alzheimer’s disease for almost 9 years now. I can’t believe she’s still with us. Still knows us. Laughs with us. Helps where she can (teaching, for example, of the extraordinary joy to be found in folding warm, just-out-of-the-dryer laundry). We are so lucky. These days I occasionally receive questions from other caregivers and family members living with this disease too. I’ve decided to blog my answers here, as questions come up, to save time. Here’s the first one–actually four that are variations on a theme.
How do I make my other family members:
- help my family member with Alzheimer’s disease?
- help me?
- do their fair share?
- offer better/very different support than they’re offering now?
You don’t. You don’t have the time and energy to bother with trying to make other people do things. Welcome aboard the S.S. That Ship Has Sailed. I used to think I could make other people do things. That me spent hours, days, and, in some cases, years, trying and failing miserably at this. That’s not me anymore. Thank you, Alzheimer’s.
Try this instead. It actually works. Plus, it gives you precious time instead of taking it.
1. drop old expectations. If it helps, write them down on paper, crinkle that paper into a ball, and drop it on the ground. Step on it for good measure. Or toss it in the fireplace.
2. begin to surround yourself with people (and things) who are more naturally really good at helping you. For example, the friends who’ve been caregivers before, other caregivers online, social organizations that get it, neighbors who get it, books, blogs, dogs, cats, children, playful adults, trees, birds, sunbeams, local support groups, and professional help. Look at all the people/creatures/beings who can actually help!
3. let go, for now, of the people who drain your much needed, very precious, caregiver energy. This includes the old you. Say a fond farewell to them and to the you who thought she could make other people do things, failed, got disappointed, got angry, and then got tired. It was so strange. That day. The day I realized that mom’s disease wasn’t making me tired. My own expectations, anger, and disappointment–in myself and other family members–was. Most days.
4. use the time you receive wisely. Your heart knows what you need. What feels good? Rage? Rest? Reflection? Re-find you. Utterly surround yourself with you-centered energy creators. This might mean new people, fewer people, new things, and/or fewer things around you. Let your heart be your doorman. Your bouncer. People allowed in your door now are those who you create energy with. You literally feel your heart lighten up when you see them. Get over what you SHOULD be doing. The people who actually light up your heart are your people now. Find them. Stick with them. Or be your most-honest, true, vulnerable self, and they’ll find you.
In the early stages, for years, we tried keeping the whole extended family together, across thousands of miles in some cases. We’d been a close-knit loving family of 40ish sweet, gentle, and conflict-adverse mid-westerners. By mid stage, however, the care requirements for both mom Linda and for failing-health-primary-caregiver-dad Jim, grew time-consuming enough that we failed at extended family communication. We had to become ok with a rift in the extended family. Dad snapped, turned on some family members, and some relationships shattered.
Here at mid stage, for us to thrive, it takes three groups of people:
1. The A team. The 10ish-member caregiver improvisation troupe, willing to laugh together, work together and love each other no matter what. We call ourselves Team Jinda. Professional caregiving help has joined the team too.
2. The B team. The 20+-member love-from-a-distance team, the family who still loves us and checks in with us via Skype and by sending words of encouragement now and then. They boost our spirits from time to time in person and also when we think about them. They are providing support to both the A team and the C team now, so they, too, have their hands full.
3. The C team. The 10ish-member has-to-move-away-for-now team. These friends and relatives have enough heartache and worries of their own that they can’t handle us as we are right now and/or we can’t handle them. They have their hands full too. We love them and don’t blame them. And the A team had to break contact with them to focus on caregiving and keeping caregivers strong. Fortunately for us, a member of our C team loved us so much that she broke ties with us first, in a most loving way, at great personal cost to herself. Taught us that it is ok to do the same. This break freed us, and we are so grateful.
The year leading up to the break–trying to keep all 40+ family members together and communicating the way we used to be–was horrible. Horrible. Lawyers and judges became involved. Hearts shattered. But since the break, we are lighter. We have so much more time. Our hearts are being healed by different people now. People who can listen to us without being hurt by us. And we find ourselves with the time again to be ourselves, finally, and to wish the same healing for the C team.
Nothing prepared us for this reality. We were lied to by a voice in our heads (our culture? our own fear?) that told us we should be able to keep everyone together and that everyone should care equally and should contribute in similar ways or how we want them to contribute or in the exact same ways that they used to. That our wise, beloved father should be strong enough not to turn his fear and heartbreak on others.
To that voice of fear in our heads, we now say “Bullshit.” We have no time for shoulds. I learned that it’s perfectly ok, fabulous even, to let some people go for now. Some people offer us more by leaving, so we can focus where we need to. And we offer more to them by leaving, too.
Our small caregiver team can be more flexible, more free. We have to adapt to new realities daily now, sometimes hourly, sometimes by the minute. Much easier to do this as a lean, mean, caregiving machine.
Sometimes the most loving choice you’re left with is to let go of someone before anger hardens into contempt within you. If you are part of an Alz A team, or a lone caregiver without your A team yet, you literally don’t have time for contempt anymore. How cool is that? And if you’re really lucky, and you accept the break, you gain time to find new support.
It’s possible to love people with your whole being and still say “Not my circus. Not my monkeys.” I love my C team members more now than ever and know that one day, after my parents pass, we will find and hug each other again. On the other hand, mom and dad have shut the door, likely for good, on the C team. It’s all they can do. It is what it is.
From my perspective, our A and C teams let go of each other several months ago now. In hindsight, I wish we hadn’t waited so long. I wish we hadn’t hung on to old hopes and expectations as long as we did. We could have saved ourselves a year of inadvertently being hurting each other. We could have opened this new time, this new rest, this new energy, for ourselves and our parents sooner. Found new companions and new help sooner. And began healing, sooner, too. After the break, life is still hard, but suddenly, life is sweet again.
Here at the center of the fire.
Here where we live out our worst fears, year after year, and cannot look away.
Here on Team Jinda, life is beautiful.
Turning away from the deepest suffering means turning away from the deepest grace. That’s the heart of this post.
Several friends and I have asked ourselves the same question this past year:
How do I keep an open heart while standing in the depths of pain, of suffering, of hell?
Everybody’s answer is different.
As a poet, my answer has been to surround myself with other poets and writers who’ve done the same. This year especially, as my family and I fell into our own personal mini-hell, I’ve turned to black poets, writers, and voices that stay with extraordinary pain, creating through it, pulling forth stunning creation, and broken, stunning, badass new selves. Work that other broken-hearted, angry, and frightened people can stay with and feel. Or willingly return to, when they’re stronger. Broken, weeping people, like me.
The voices of black poets, especially, have pushed me along this year when I thought the pain of my family would shatter me. They surrounded me when it did shatter me. They celebrated with me when I came out the other side a new creature: stronger, more gentle, fiercer, kinder, beautiful, a voice forged in fire.
Staying with pain, standing in the fire, in your own hell, is horrible. It is horrific. Words fail. There is screaming and yelling and crying and rage and grieving and mourning and exhaustion and not getting out of bed and cowering and hiding and giving up entirely. The only true words that can emerge at this point are: “This is hell. I am in hell.”
I’ve learned to listen to voices that have lived through and spoken those words. And to those who’ve died and had others speak those words on their behalf. They were my saviors this year in many ways.
It takes a long time to get to them. Yet, once spoken, the words “This is hell.” can bring forth a new self. One cracked open to deeper insight, growth, clarity, strength, peace, friendship, and grace. Ridiculously deep grace. Grace that pre-hellfire you couldn’t even imagine.
Suffering is horrible. You have to let it be what it is: horrible. Name it. Face it. Fall apart.
Then, not before, can you become more graceful. When suffering can fully move through you instead of pooling and stagnating within. Suffering can become a tremendous gift when we’re ready. A tremendous gift to a community or a country when we’re ready.
In Ferguson. At the center of this United States in November in 2014. At the center of our collective, unspoken, ignored, stagnating and sinking-us hell.
To my ear, saying that black lives matter is not saying that the lives of law enforcement don’t. It’s the opposite. It’s a reminder to those of us still avoiding our pain to step into the fire, wake up, and remember that all lives matter. All lives. That black children’s lives matter. That watching black children die in the street, and anywhere else, breaks our collective heart again and again and again in this country. That killing hurts everyone. White America is ready to listen now. The repeated, pointless, death of child after child after child in this country has pulled us into our own hell. All of us. This is it. This is what hell feels like.
To my ear, which now contains my heart, people saying black lives matter are saying this:
This is hell. I am in hell. We are in hell. Talk to me. Work with me. Help in whatever way you can before our whole country burns to the ground on the backs of dead children.
Hard to hear. Hard to say.
And not everyone is ready to hear and say these words, even now. But I am.
I’ve been through my own hell this year, and I find that it’s much easier to listen now, to face hell, and to speak. I don’t have to turn away from suffering to find grace. Grace is always here.
I can stand with those in hell.
I can stand with the vulnerable. With those who walk together, unarmed, terrified, with little hope, yet moving anyway, for the sake of their neighbors, children, selves. People throwing their whole being/community/country onto the fire for everyone’s sake, not just their own. Because they know we’ll be better for it.
I can stand with those who have stood in the heart of their own hell, burned, shattered completely, and stepped forth new people, willing and able to speak for those who no longer have a voice.
Wow, do they move with grace.
There are hundreds of links available now to find and follow if you have the courage and space within you to do something in response to what you know is happening in Ferguson right now. My dear journalist friend shared this one specifically for those unaccustomed to stepping into the fire of racism and white supremacy at all, let alone together.
My post is for people who can’t do anything right now. People caught up in their own mini-hells, for example, too exhausted and sad and beaten down and scared to extend care out beyond the smallest of circles yet. I get it. I’ve been there. So recently that my tears aren’t even dry yet.
I ask one small thing, for your own sake. If you cannot bear to act or look at Ferguson right now, please don’t look entirely away. Instead, look for those in the heart of the fire who move with the deepest grace. They are there. Look closer or have someone look for you. Chaos will organize itself around them. Watch and notice that even chaos bows before deep grace.
Watch for those moving with deep grace in the heart of hell. Watch and learn. They will teach you how to keep your heart open within the deepest suffering and pain. How to survive your own hell.
You need that deep grace now more than ever. We all do. Don’t look away.