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 turn 45 Sunday. Last month my body began celebrating by throwing me hot flashes in lieu of a party. They’re like a personal, internal fireworks show. So I’ll be ringing in this birthday standing hot, alone, and naked outside on the deck, staring up at the stars at 3 a.m., trying to catch a breeze so I can go back to sleep. That may sound like a complaint but it’s not. This new body? The one who demands I strip to sleep and insists that I move open-eyed and naked like an animal in the darkness in search of breeze on my face? I like her. I like her a lot. She makes being a poet a literal breeze.
Here at 45, I’m done sugar coating things for myself and others.
Here at 45, I am enough. Just me. Just here. Sans lists. Without doing, fixing, stressing, worrying, or shopping to relax. Most days, I am enough now. Just me. The me that’s drinking green tea and taking Evening Primrose Oil supplements to cool down, turning loose pieces of paper into makeshift fans, and rediscovering star-gazing, sweatily, in the middle of the night. In fact, I’m more than enough. Here at 45, I’m totally bad ass.
In part, because I have to be. As youth fades, you become invisible to many of the parts of the world that you cultivated before. I’m making peace with that. Learning to cultivate new worlds, new friends, new ways of being. Learning to be as content moving alone in the darkness as I am moving visibly, collectively with friends in the daylight.
I used to avoid giving advice like the plague. I’m not a fan of receiving unsolicited advice myself. Bleh.
And, if you liked that me, this may not be the post for you…
In the fire of family pain and the death of friends this year, I became a dragon and I burned my to-do lists to ash. My daily to-do list now isn’t a list at all. It’s two interwoven mantras:
- I Love You
- Fuck This
I say I Love You to the world, myself, and others as often as I can now. And I say Fuck This (or Fuck That or Fuck It, I like to mix it up) almost as often now too.
Beyond these mantras and my writing (where I get to play with these mantras in infinite variety) everything else I do now is icing on the cake: great when it happens, not so terrible when it doesn’t.
At 45 I have failed. I have fallen apart. I have lost loved ones. I have broken down. I have looked like an idiot. I have not gotten nearly enough done. Regularly. I’ve learned that all these things are ok. I’m ok when they’re happening (even while sobbing or screaming to cope). I’m ok after they’ve happened. Often better than ok. It’s these things that have made me the bad ass that I am now: a person who fails, falls apart, receives loss, breaks down, looks like an idiot, doesn’t get nearly enough done, says Fuck It, I Love You, laughs with friends and family, and moves on.
- Say I Love You often
- Say Fuck This often
There’s my list for now. Possibly my last list. Who knows?
Writer Anne Lamott would call these words prayers. You’re welcome to do so, I Love You. And calling them prayers, for me, doesn’t feel genuine, so Fuck It, that’s not what I call them. For me they’re mantras: words I repeat throughout the day to remind me of my true self, my deep connection to everything, and my own freedom to choose disconnection in any moment, too. Some days I practice them. Some days they’re habit within me and keep me present despite myself. To pull/push them toward being habit every day, I’m learning to involve my whole body in them. I try to hear myself say the words, when possible. Try to use appropriate gestures, too. Or do my own special dances or songs, to accompany the words, when possible. I try to be present enough to witness the rippling impacts of my doing so.
Here’s one story from my life in which dragon-me burned away the To Dos until only I Love You and Fuck This remain…
Every day I log in to the human world as an indie author: a world that is chaotic, loud, demanding, contradictory, and often unkind. It tells me to get an agent. To do book proposals. To make business plans. To go to an endless stream of conferences and workshops and seminars and readings and networking events. To get degrees. To do proposals and pitches. To create an author platform. To live on social media, storytelling, and reader sites. To make friends with all local book sellers. To do in-bookstore readings. To visit book clubs. To teach. To grasp how to sell books and ebooks online on a dozen new and constantly shifting platforms. To read everything everybody else (who is really good) has ever written. To have a monthly newsletter. To work only with the best. To have perfect covers and keywords and descriptions and perfectly edited work and to pay for all this complementary expertise magically, somehow, out of pocket before I myself am making a living as an author. To get blurbs of praise to put on my book covers ahead of time. To never include color images in books. And good God never include color images in poetry books. To ask more for my books. To ask less for my books. To give books away for free. To never give away books for free. To have an in-depth Press page. To finish and publish covers months ahead of time. To create art beyond the written word, which is, we’re sorry, dead. To focus on just one genre. To build deep community within one genre. To ignore genre. To write for a cause. To never write for a cause. And most importantly, to be writing every day, all the time, and do nothing else.
Enough. Fuck This. You know, I think I truly, deeply learned this technique by watching my mom, who has Alzheimer’s disease, learn to do this first.
With Fuck This’ help, two years ago I moved to an island where I now spend hours in silence and hours in nature each day. I spend three days alone writing most weeks. I spend one night a week talking and eating and relaxing with close women friends. I spend two days working side by side with my partner Daniel and one or two days relaxing. Or some variation of the above. It was my own Fuck This that returned me to me. That returned me to I Love You. I’m finding that our Fuck This is wildly, uniquely our own and our I Love Yous look different too. Yet within us, they feel remarkably similar.
I Love You silence, trees, birds, whales, rocks, driftwood, wind, rain, sunshine, sand, warm days, sunsets, chilly nights, making things with my hands, talking with family, and meeting my people: the random people wandering in dog parks and on beaches and creative indie humans scattered around the world.
I Love You, reading books and writing books. I Love You, friends and family who help me create, share, gift, and sometimes sell books. I Love You self-publishing world that allows me to play with everything, including doing everything at a seasonal, tidal, poet’s pace and redefining what a book, a series, a genre, a writer, and an artist even is. I Love You, humans willing to be human together. People who look at what being “An Expert” or “An Artist” or “A Perfect Parent” or “A Teacher” or “A Woman” in the old world meant and say Fuck That.
I Love You, parents, who recently decided to move and join us here on the island, where we’ll all get better at saying Fuck This together.
When I wake up tonight at 3 a.m., in a puddle of sweat, neck on fire, I will begin by whispering Fuck This. Then I will rise, move out onto the deck into the night, look out at the ocean, up at the stars, and whisper I Love You.
We are one now—this ocean, these stars, and I—so one I Love You covers it. And when one I Love You covers it, it becomes easier to say Fuck It to everything else. Including to-do lists.
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.
Shit. I’m just getting to write about all sorts of fun stuff these days. Woo frickin’ hoo, life, thanks. I’m not an expert on this subject, just somebody going through this pain right now.
When to unfriend somebody you love – pre-contempt
When you see that the next step you’re most likely to take together will be feeling contempt for one another, and you don’t want to go there, because you love each other, it’s time to part ways for a while. You’ll sense that if you don’t step back now, take time to process pain and heal separately, that it’s possible your relationship will never recover. Trust your intuition on this. Allow your heart/body intuition to override your guilt and your desire to fix things. The time to fix things is over. For now.
Signs that it’s time to unfriend a loved one
- You are going through a drawn out, painful, heart-wrenching life transition. So are they.
- For them to survive and begin to heal, they need one story to be true right now. For you to survive and heal, you need a very different story to be true right now.
- When you share what you’re feeling, you inadvertently hurt them, repeatedly. When they share what they’re feeling, they inadvertently hurt you, repeatedly.
- That hurt begins to feel like it’s on purpose. You begin regularly hearing meanness in what they say. And they hear it in what you say. Things that a stranger listening in on your conversation would never jump to such pain-fueled conclusions about. Your mutual pain is deep enough that you all begin to imagine slights that don’t necessarily actually exist.
- Instead of two (or more) equally valid perspectives, their truths become your lies, and vice versa.
- Every time you try to support one another, you fail miserably. It keeps getting worse, not better.
- When you speak your real, lived experience and perspective, you are told that you are wrong again and again and again. You never feel truly listened to or really heard.
- There is a wall of pain between you. You try repeatedly to holler over the wall that you really do see their side of things—and should be allowed yours—but it becomes clear that they’re having the exact same experience that you’re having (feeling that they’re being told that they’re wrong, feeling not listened to, not heard, hurt by you).
- The existence of your story is too much for them to bear right now, and vice versa.
- You create and/or share something—a drawing, a painting, a poem, a song, a saying, a video, etc.—to help you and your closest others get even closer and move through your loss and grief together, and you learn that they were devastated by what you created/shared.
- You stop sharing your whole self, your true self, your real feelings—to protect them or yourself—to the point that you become exhausted, or get physically sick, because right now you really need to be able to share your whole self and your real feelings. And Facebook is a place that you want to/used to be able to do that.
- You realize that time spent trying to hold up your old world/story/family together is unhealthy for everyone in your family. It is interfering with all of you finding and surrounding yourselves with the people you desperately need right now to create new worlds/stories/families for yourselves. Your heart breaks as you realize it’s no longer each other that will help you heal.
I wrote and shared a long poem about our family’s struggle with Alzheimer’s Disease this week. This poem. We’ve lived with Alzheimer’s in our family for 9 years now, and for the first time as a poet and a writer and a human, I felt ready to talk about it. More than that, I need to share about it now because my immediate family needs boatloads of new ideas, stories, help, support, and heart comfort right now as my mom moves into the middle stages of the disease, and my dad crumbles completely under the weight of being a full-time caregiver.
And it worked. I got what I needed. Friends and strangers alike showed up to share their stories, offer their support, and surround my breaking heart with love, light, understanding. I felt less alone. Less helpless.
And then I learned from my aunt that what I’d written was devastating for her and my uncles. My story too much for them to bear. A story out of alignment with theirs. My truths are their lies. These are people I love to my deepest depths. People who helped raise me and played with me and who have loved me every day of my life. I adore them. And they live thousands of miles away, so Facebook has been the primary place where we’ve connected and shared for years now.
This aunt told me that she loves me but can’t take any more of our pain, and she unfriended me. Letting me know that she’d reconnect later. I sat with that for a minute. Breathed it in. I, too, had “hidden” relatives this year that have been causing me chronic pain. But it had never dawned on me to unfriend them. But when she did that, she freed both herself and me. I felt lighter and freer. I actually thought “Why didn’t I think of that? Why did I stay in this masochistic situation for a year? She’s is a bloody genius!” I was reminded how much I love her. I followed her lead and unfriended my uncles and her daughter—those who are being hurt by me and my story. Now, suddenly, after a year of trying to fix our family, I can just share my experiences without fear, and they can share theirs without fear! Hooray! I am at a point where I have to write about Alzheimer’s Disease and my experience of it. They’re likely at that place too. I want them to heal. I don’t want to cause these loved ones one more second of inadvertent pain. That’s not me. That’s not them. Not us.
Example: how to unfriend a loved one
This is not advice. This is way too individual, personal, and painful a task for advice. This is simply what my aunt did for me and what I, in turn, did for the family members I unfriended. I’m sharing it because although this was painful, in how we did it I also found a needed sense of closure (for now), peace, and a surprising freedom and lightness of spirit (in realizing that I can, for the first time in a year, share my whole self again on FB). And I want the rest of my family to be able to do this too, for themselves, as needed. And know that I’m 100% ok with them unfriending whomever they need to unfriend now, including me, to heal.
In a private message or call (wherever you feel safest):
- Remind them that you love them.
- Tell them you are sorry for their loss and pain.
- In one sentence, explain that you need to step away from them on Facebook right now so that you don’t inadvertently cause them pain again.
- Don’t try to explain anything about your story/side, causing both of you more pain. The time for trying to be heard over the wall of pain has passed.
- Optional steps:
- If it’s not forever, tell them it’s not forever. In my aunt’s case, she left it open ended. We’ll be back in touch again someday. And she reminded me that she’s always still there if we really need her. I decided to give my uncles and cousin a time span. I’m disconnecting for one year, while we go our separate ways to heal, and I hope to reconnect with them a year from now.
- If you want to, give them another way to connect with you if they really need you or want to talk further: your phone number, email address, Skype details, etc. If you don’t want to do this, don’t do it.
- If you want to, give them the option to reengage as Facebook friends. If you don’t, don’t. You may want to say, for example, “I know what I’m going through, my experience, is too hard for you to hear right now, so I’m unfriending you for a year. If, in the coming months you’d like to try reconnecting here, just send me a friend request and we’ll try again if we’re both ready.” Whether or not you make this offer depends on your heart, not theirs. The state of your heart, and what you want, matters most here. If you want to be apart for a whole year (or more, or forever), don’t make the offer to connect sooner.
- Remind them that you love them. So that the last words they receive from you are words of love.
- Unfriend them.
Give yourself a long time to heal. For me, this feels like cutting off my own hand. How kind to myself would I be if I lost my hand? How long would I allow myself to heal and recover? That’s how long I will be extra good to myself and surround myself with the best of the best heart healers for me right now. That’s how I came up with a year apart. I need at least that much healing time.
After you unfriend people you love (which happens in one second and so could be mistaken for a little thing when it’s not), sit and breathe deeply for a while, go for a walk, hug someone or some furry beast who loves you, create something, or do something else that brings you peace. Spoil yourself for a few days. Take comfort in the fact that you’ll all have more energy and time to connect with people who will truly help you mend your broken hearts without simultaneously also stomping on them.
In a workshop about fearless writing that I attended a while back, we began talking about memoirs. A memoirist in the class (sorry, I don’t recall his name) said something so profound that I can’t shake it. He said (and I’m paraphrasing) that the only pure, lasting truth in any family story is how people felt. To write fearlessly about your family, in a way that people will accept and connect with, you have to write and write, through many drafts, about how you felt. Don’t allow yourself to stop and publish when you are the victim in the story. Keep going. You must write and write and write until you become the protagonist – a spirit who others can relate to, see themselves in. Not a victim, not a braggart, but a life traveler, a story teller, a learner, a broken-heart survivor, a seeker of higher understanding. The things we all are. If you are writing yourself as a victim, keep writing, your story’s not done.
When we make the decision to unfriend beloved family members on Facebook so that we can all heal, we’re creating the opportunity for all parties to be able to come back again to that story one day on their own terms, with new found strength and abilities to stay with it longer next time, listen more closely next time, dig a little deeper next time, until we’re able to craft and live a new story together. Or part as cherished friends. The people we love deserve nothing less. Social media hasn’t changed that.