We have some news. I’ve been away from my computer for a week—up with mom and dad—thanks for being patient with me. A week ago Thursday, Mom moved into Harbor Care, the memory care building in their retirement community. Dad still lives in the cottages, just one block away, and visits daily. I’ve been visiting late mornings or early afternoons, every other day since it’s a 40-minute drive there for me. Yesterday she and I did a spa day together and had lunch. Family eats for free at Harbor Care!
At first, they asked us to stay away for a few days, so that she could bond with her new friends and caregivers and adjust to her new routine: hardest 4 days of my life. My heart felt like a stone within my chest and I cried if the wind blew the wrong way. I’ve since learned that dad snuck in about 10 times to check on her from a distance. 😉 However, before you get too sad about Mom’s move, listen to what happened this week. From day 1, Mom clearly adored her new digs. She’s been noticeably improving by the day this week. She is talking again (her new friends are chatty and often talk nonsense mixed in with clarity, and we think it’s making her comfortable again with at least trying to speak and not minding nonsense so much). She is laughing and smiling more. She’s even back to recognizing herself in the mirror and using it to adjust her hair instead of thinking that it’s a window with friends on the other side. This was the last thing any of us expected—because it’s always the horror stories that you hear about—so it’s almost unbelievable. But our truth is this: surrounded by friends, even here with late stage Alzheimer’s, mom is thriving at the moment.
Despite her disease, Mom is young and relatively physically fit. Where she lives now is beautiful: they have gardens to stroll through and look out into when the weather is cold, two big activities rooms, 3 rooms that families can use to have private meals or big family celebrations, plus a big TV room with a huge stone fireplace that’s always on now that it’s cold. Because of her disease and her own amazing nature, she only sees the beauty in the place—she misses most of the sadness-inducing things that we see, such as railings along all the walls, nurses stations, and a few very old people in rooms who can barely move anymore. There are 40 residents and what I’d guess is about 25 people there caring for them round the clock (~5 caregivers, 2 nurses, 3 fun activities people, maybe 3 laundry and cleaning staff, 3 front desk staff, many aides/orderlies, a hairdresser in the hair salon who was already mom’s friend, a nutritionist, and the kitchen staff). The place is bright and decorated to look like home (big windows, cool wardrobes, decorated shadow boxes with their names on them at their doorways, and some rooms even have white picket fences and brightly painted mailboxes outside of them). Everyone loves mom. She is almost always happy and the older ladies think that she and I are beautiful and tell us that repeatedly: so good for the ego! The staff tells me every day that her laugh is infectious.
Mom has a new posse of friends: about 5 of the women are younger and relatively fit, like mom, and all of them are far more verbal/talkative than mom is. Two of them took her under their wing immediately. So, every morning they come get her, go for walks around the big circle that the building was built in, go to exercise time together, go to coffee/tea/hot chocolate together, eat meals together, go to arts and crafts and readings and other activities together, and to the singalongs. The big TV room with big fireplace is just across the hall from mom’s room. After supper, they all gather there and watch movies, usually musicals, and they sing together. She is rarely in her own beautifully decorated room that we spent so much time to make welcoming! And we couldn’t be happier about that.
Mom still recognizes us and loves to see us. I just did a spa day with her yesterday: we did lotion hands, lotion feet, and green clay masks on our faces, which made her laugh out loud for half an hour. Dad pops in to visit some mornings and give things/tips/advice to the staff, and he has supper with her most evenings and sometimes stays to watch old movies with them. So, while it still hurts us to not have her with us all the time, we’re still being healed by her. She’s still being our rock and our leader. We are SO DAMN LUCKY. Even with late stage Alzheimer’s disease, she’s amazing. A decade and a half in, she still says “I love you” with a twinkle in her eye, like always. Words fail.
The staff recommends to us that we not take her out for 3 to 4 weeks, to allow her to really fully get that this is her home and to adjust to their remarkable routine, so we’re just visiting her there at the moment. But she’s doing so well that I plan to still take her out for tea/coffee and walk with her over to the assisted living building now and then to visit friends. And we hope to bring her down to our house for visits for these next two holidays. If she continues to improve or stay the same, she’ll definitely be able to do our house for Thanksgiving and Christmas again this year. This is shocking to us, as she’d really gone downhill fast across the past 6 months: more angry and confused than happy, thinking we were abandoning her when we sat at the table to play cards, talking to the people behind the mirror, etc. She knew what we didn’t know: that she needed a larger, round-the-clock community of peers/friends/activities/support. She is magic. We are the daughters/spouse/siblings/friends of a magical being. She is clearly where she needs to be now: she’s among peers again and supported by cool women caregivers and nurses–round the clock–and she’s totally loving it! Every person is different, so maybe a place like Harbor Care isn’t right for everyone, but it’s clearly right for her.
I hope you’ll come visit as often as you can (and as soon as you can, since this disease does progress inevitably). And if you can’t, but you want to send her something, here’s what’s appropriate as a gift for mom now: upbeat cards, photos (especially photos from her youth and from key moments in life such as your favorite trip together or the birth of your kid or the best party you ever had together), paper wall decorations such as holiday decorations (no nails in the walls here), fun stickers that she and I can stick on her mirror or elsewhere, costume jewelry bracelets (she loves to show her bracelets to her friends and family), or a stuffed animal (she likes dogs, cats, and sea creatures). Another fantastic gift would be a gift for her caregivers—like a bouquet of flowers for the caregiver office or a gift card to Starbucks or Whidbey Coffee. These folks do life-saving, amazing work. They help her get dressed in the morning, help her bathe and get ready for the day, help her make her bed and find her glasses, do her laundry, make sure she takes her vitamins and medicines, smile and hug her and say “Hi Linda!” whenever they see her all day, help her find her way to activities and social gatherings, help her get ready for bed, and they even sit with her until she falls asleep right now. They’re warm and kind, professional angels. A gift to them IS a gift to Mom now. They are family, now, too, and we’re so very lucky to have them in our lives. Gifts can be sent to dad or to us, and we will deliver them on your behalf.
Thank you for your unwavering love and support of our family.
We love you too.
– Linda and Jim, Lori and Daniel, Jen and Cam and Jocelyn, and Eva, Batman, Joe, and Bella
I wrote this three years ago and somehow forgot to publish it. Its about to become an essay in my new book Unshaken Wonder, which will reach others in October 2017. I’m posting it here now for my friend Clay Forsberg. In part, in response to his lovely new essay Staying Strong. Stay strong, Clay! You’ve got this…
I shattered this year as my family shattered.
My mother has Alzheimer’s disease. My father’s been caregiving for 9 years and his own health and well-being and attitude have taken a hit. My sister and I are care partners for both of them now. My extended family has been in a court battle over my grandparents’ estate for a year and a half. Too many of my once-close family can’t stand each other now. So much anger. Some days I choke on it.
Many in my family won’t speak to each other at all now. Some quietly drifted away. Some cut ties with us because they can’t handle our pain on top of their own. One I cut ties with because after a year of inflexible rage I realized that I was actually talking to a wall, not a person, and so was she. I’ve been told my poetry is experienced by some as bashing the family and that my immediate family is no longer experienced as part of the larger family. Some are certain that their ties are broken forever. Some cry for weeks on end. Those not speaking to each other tend to make wild assumptions about the motives and stories being told by the other side. There are apparently “sides” now and a lot of us don’t recognize that taking sides and creating sides are the same thing. Several of the people who spent decades teaching me to love tried—and failed—to teach me to hate. Game changer! It’s bizarre. They rage at each other. Rage to anyone who’ll listen, actually. Sometimes they appear to enjoy imagining and saying the worst. Many feel torn in half. Betrayed. I know I do.
If you want to remain in the Keep Calm and Carry On world forever, by all means, don’t come here. Don’t enter the space between.
Here we rage. We fail. We scream. We yell. We weep. We make huge, unforgiveable mistakes. We fight. We flee. We watch our hands become axes as we cut ties with those we love/hate/must move away from just to survive. Wonder if those sharp axes will ever be reimagined into poet’s hands again.
Here we shatter.
From Keep Calm and Carry On Land, we may appear crazy. Out of control. Scary. Broken. Dangerous.
Oh but we aren’t. We are living a different kind of life is all: a wilder, wider, always-moving-now life.
One life is a pond. It is calm and serene on the surface. Its danger is stagnation and limited self-reflection pointing only at the sky. In humans this can show up as stability. Without shatter, though, it can also show up as rigidity, self-righteousness, losing touch with beyond-self reality, and choking on a festering stew of your own judgments and imagined monsters. I don’t have to imagine this. I live it.
Life within the shatter is more like a river. Its danger is flooding and overwhelm. In humans, this can show up as flexibility, empathy, and exploring the nature of things far beyond the self/pond. Without some stability, though, it can also show up as being so far out of control that you visibly cause harm to yourself and anyone in your path. I don’t have to imagine this life either. I live with shatter every day now.
Shattering is not easy. The shattering of my mom‘s former self and memory is heartbreaking some days: wonder-filled and awe-inspiring and beyond amazing other days. This past year, the shattering of my entire family was so heartbreaking it felt like I was going to die. In case you’re wondering, I didn’t.
Instead, I became a family elder. Cut ties with some relatives (and some cut ties with me) to have more energy for supporting my parents, sister, aunt, cousins, husband, and self.
I became sillier. I binge watched all 153 episodes of Gilmore Girls on Netflix to mend my broken heart. A show that I’d never watched before and written off in passing as ridiculous, harmful, sexist, girly pop-culture brainless fluff. (Gosh, I’m not judgmental at all, am I?). The show mended a little girl’s broken heart. This little girl, age 44. My sister and I then reimagined ourselves as an improv comedy caregiving troupe: Team Jinda.
I became a dragon. I spoke my truth in person, in poetry, and in essays and drew the wrath of extended family, who screamed “You know that’s not true!” at me for sharing my perspective. It worked. Those previously inclined to rage at my exhausted father and my pregnant sister turned their eyes and their rage on me. Or tried to anyway. It’s remarkably hard to fuck with a dragon: especially a poet dragon who works part time as part of an improv comedy troupe. I am a person now comfortable in the presence of pure rage. Yours and mine.
Those who appear crazy, out of control, dangerous, scary, or broken don’t scare me as much now. Those who rage, scream, flail, yell, weep, fight, flee, or make unforgiveable mistakes don’t scare me either.
That’s just my people.
People who shattered. Survived. And got remarkably fluid, powerful, and silly in the process. We got stronger.
We move together like a river now. More powerful, and broken, than before.
We mix metaphors like fancy cocktails with little umbrellas.
Here within the shatter, the sign in the window always glows Open. Wide Open, actually.
Except for the brief moments it glows Get the Fuck Out and Let’s Try Again Next Year.
That’s what staying strong looks like for us now.
Stay strong, my friend!
In late February 2017 before the gray skies here on Whidbey became blue, I looked out the window and saw a poem, about a dead tree, in the middle of the just-barely-beginning-to-bud forest. I called the poem Life 101. I eventually saw it for what it was: a poem for my friend Bernie DeKoven.
Six weeks later, in still-gray early April, my long-time friend and mentor Bernie DeKoven—the very friend who I was dedicating my new and most playful book to—shared with us that he has been diagnosed with the kind of cancer that ends your body’s time on earth, no matter how ridiculously cool and very much needed by everyone you are. He has a year to live, at most, the doctors’ say. The moment I heard, I got so angry. I cursed the universe, and life herself, as I wept and wondered how I would manage to honor his request. This request:
What I need is for you to continue your play/work however you can. Play games. Play the kind of games I like to teach – you know, those “funny games” – harmlessly intimate, vaguely physical games of the semi-planned, spontaneous, just-for-fun ilk, basically without equipment, or goal, or score or reason, even.
Teach those games to everyone. Play them outside, these games. In public. With friends. And strangers. As many as want to play with you.
Make up your own games. Make them up together with the people who play them. Play. Teach. Invent. Play some more.
Also especially – look into this playfulness thing too. Deeply. Because we’re not talking just games here. We’re talking about how you can let yourself be as playful as you’ve always been, how you can be playful almost anywhere with almost anyone, how you can invite people to be playful with you, in school and office and in the checkout line: all kinds of people with all kinds of abilities from all kinds of backgrounds.
Maybe download a free copy of A Playful Path, even.
But I wasn’t quite done being angry.
Jesus, Bernie, I thought. Really?
Be playful? Right here in this moment? In THIS year?! In this terrible, horrible, pain-in-the-ass, this-totally-sucks, you-give-us-f#$&ing-Trump-but-take-our-beloved-Bernie year? The year my mom’s Alzheimer’s disease will likely land my father in the hospital and her in a memory care facility? It’s like 2017 was specifically designed to make me give up, defeated, shouting “Screw you, universe!” from under the bed.
But then, there you are my dear, wonderful, stupid-head Bernie.
There you are: already being playful.
Still doing your daily play/work in the world, plus bringing in more playful swings to your local park. Still being my playful muse/mentor/friend. And doing the same for so many, many others, too. You’re just, just… what?
You’re just so damn beautiful.
The love and kindness that you share with Rocky, your kids and grandkids, neighbors, old friends, and new friends? The play/work you share with us? The videos. The talks. The games. The websites. The blog posts. All of it.
It’s just so beautiful.
God dammit, Bernie. How am I supposed to be the playful being that I want to be without you here?
Without you around, who am I going to bounce ideas across our country to as if the country is just a giant ping-pong table, with a Rocky Mountains net, and our ideas just giant bouncing balls to play with?
Or wait, no. Rubber chickens.
Ooo, yeah! Giant Free-Range Rubber Chicken Idea Ping Pong.
How fun would that be? No. That’s not quite right, is it?
How fun it’s been! How lucky we have been. You and I have been playing Giant Free-Range Rubber Chicken Idea Ping Pong for more than six years now. I remember the first time that you commented on my blog. Remember blushing to my roots when I realized who you were. It was like Elvis giving advice to his most star-struck, teenage fan (well, an older Elvis and a very old teenage fan). 😉
And I remember the day you told us that you’d turned down a professorship so that you could just keep on doing what you do–the writing and the playing and the speaking and the wandering. I did that once too, about 8 years back. I didn’t fully know why then, but now, my friend, I do. It was saying no to them that allowed me to play this game with you. What a gift. What a solid choice based on nothing much more than intuition. Hmmm…
Bernie, wherever you go and whenever you go, I’ll still come meet you in the warm evening sun. Right here, within the field of imagination, on our country-sized ping-pong table with our playful ideas flying in directions both silly and profound, and sometimes going in wholly unexpected directions like so many rubber chicken balls. Just ask Mahatma Gandhi. I’ve been playing ping pong with him since I was 11 years old. He’s been dead the whole time, and he still kicks my ass regularly.
I suspect that you and I will be playing Giant Free-Range Rubber Chicken Idea Ping Pong as long as it’s fun for us. Which—given our skill level, general love of play, and abiding love and faith in each other—will be long after both of our bodies are gone.
We may have to give up the body when the body says it’s done, but we don’t have to give up playing, player.
Not now. Not ever.
Because you and I—playing together—are what the universe herself wants to be.
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.