We’ve had one hell of a fall and winter here.
We helped Mom move into a memory care home where she’ll have the round-the-clock, large community support she now needs. We’ve been moving with our own grief and helping each other, and Mom and Dad, with theirs and with creating different, slightly more independent from each other lives than Mom and Dad have lived for the past 50 years.
And then we lost Daniel’s younger brother Jim unexpectedly, and the whole world shattered around us. The day we learned of his death, I remembered something that I once learned as a kid: when someone we love dearly–someone who we think we can’t possibly live without–dies, the sky herself shatters to make space for all our grief. So we’ve also been sitting with our own grief at the loss of Jim and helping each other, and Daniel and Jim’s parents too, with all of us wandering about like alien toddlers with uncertain feet on this newly shattered world and creating different, more conscious-of-our-own-fragility-and-connectedness lives for ourselves again. And then our oldest cat got sick and we were so sad and exhausted that for a moment it felt like this one little thing might almost break us. And then I got sick, and landed in the hospital, actually physically broken for a bit, and we had to change ourselves and our lives and our habits yet again. And then, my writing, creating, and playfulness guru and friend, Bernie, passed away after waging the world’s most beautiful, generous, and playful final battle with cancer.
So, for many months this fall and winter, we went dark. By that I mean that we moved within, like an apple tree does during the years in the larger cycle that she finds herself covered with tent caterpillars. In what felt like an instant when we learned that Jim had passed away, we just didn’t give a rat’s ass about most of our former responsibilities. Or our projects. Or our online presence. Or our former thoughts and worries. And for a long while, even our former selves. Instead, we were all in on the present moment together and with those closest to us. For 5 months.
And it was horrible, what we were going through. Truly horrible. It totally fucking sucked. And yet, somehow, suddenly, in the moments between our sad moments, we also feel glorious. Truly glorious. Because when you’re that low and broken, you can see so much of what you’ve been missing from other perspectives. For example, kindness can come to us from literally anywhere–if we can let it in. I’d forgotten that. We can imagine any person, any action, any words, any thing–into a kindness, given our community, our playful elders, and time. So we don’t have to worry about our monsters anymore. Not this year anyway. This year, we’re noticing and creating and finding kindness everywhere we go.
We’re being reborn right now, together, and we can see it. We can name it and know it and own it as who we are. We are becoming more of our true selves right now. Does that sound odd? I don’t quite have the words for it. We’re more us now. After all the unexpected pain and even the expected pain–right here–both within and after all the darkness, we are SO bad ass all of a sudden. Because we are receiving one the most amazing gifts that loss and grief offer from our perspective: rebirth. We’re offered a chance to start over as beings who literally–in the blink of an eye–dropped almost everything that we used to be. That makes us (and by us, I mean residents of earth) more remarkable than our old stories allowed us to believe. And as we remake ourselves now, together we’re hanging on to what matters most and we’re letting all the old bullshit go. We’re just letting it all go.
We are remarkably lucky. We now find ourselves surrounded by a vast, fierce, and kind community that stretches around the world and includes ancestors and rivers and trees and sky and stars. We’re grateful to everything at the moment. Everything. We’re grateful to friends who forgive us for disappearing for long stretches of time. To those who cover classes that we can’t teach because we can’t stop sobbing. To those who bring us food and hug us and clean up when we just can’t–regardless of our politics or theirs. To those who share their ideas and stories and who send us love and prayers from afar. And to those remarkable beings–like sisters–who somehow manage to make us laugh out loud at literally the worst moments of our lives. What unbelievable and remarkable magic is that?! It boggles the mind. And now we’re even grateful to those filled with so much of their own pain that they cannot bear ours at the moment. People who can’t, at the moment, stand our presence, our voices, and our lived experience. Even they hold a fierce kind of kindness and lessons for us to learn now that we have the space within our selves to see them. And now we know that residents of earth, in a single instant, can drop almost everything they once were in a moment of pure love or extreme tragedy. We are magic.
So here we are. We still look like us and live these lives. I still have 20 pounds to lose and Daniel is still trying to get to the gym more. But those who know us best, and anyone willing to listen, also know that we are standing here with different, more prone-to-tears eyes. Different, more prone-to-empathy hearts. Different, more prone-to-listen-a-long-time ears. We listen, now, until we feel empathy, and then we speak. So we’re a little less quick to judge. More prone to forgive. More prone to be deeply curious and ask questions from simple curiosity. More prone to speak up, too, and say what we believe needs to be said. We’re far better at saying “Fuck it. You be you, think what you think, say what you say, and we’ll just love you anyway.” Because together we can love almost anyone now. We don’t need you to be loveable to love you anymore. We can love–period–so we love. That’s magic. Or grace. Call it what you will. Experiencing it feels like the important part.
What a glorious place this is. The universe. The planet. Her inhabitants. The beauty. The laughter. The unfairness. The struggle. The pain. The loss and grief. All of it. Wow.
So, FYI, this is how I get to the point as a person, an essayist, an author, and a poet. Find the wow, visibly, together, then look for the point. And the point here, I think, is to find a global community of people who deeply want to experience and talk about befriending wonder and unleashing playfulness. We’re almost to the point, can you feel it yet?
The one other thing I did last year is this: I wrote a new book. I wrote a book that I love and that many others now love too. It’s about the unshaken wonder that lives at our core and how we get back to it across our lives, at any age. And about what it takes to remember and become our playful elder selves, at any age: a playful elder being the people (and trees and dogs and places and other things) in whose presence unshaken wonder often arrives and playfulness is usually unleashed in all directions around them.
As great as the book feels to us here, the reality is that I suck at book promotion. I totally suck at it. That’s not self-denigration. I don’t mind sucking at it. That’s just fact. Brief sound bites and short book blurbs and little trailers and tweeting tiny things and creating brief “hooks” to entice people’s interest and juggling 12,000 book promoters and groups? And doing all of that in the “I just want to relax” time after spending 18 months creating a book? Bleh.
Ah! But this new me is different. New me decided to get help this time: a ton of help. My book promotions guru/helpmate/friend, Sarah, for one. She’s the one who told me to share my book trailer with you via a blog post, so that’s what I’m doing at the moment, not that you can really tell yet. I do 96% of everything she suggests I do, because she’s really good at this. And she has me doing what feels like about 8,000 other things too, almost all of which are new to me and hard and scary, and tight deadline driven, and as the tasks piled up in March, I started to get stressed out. I actually got sick again. So much for letting go of old bullshit. And. Then I did something that I’ve never thought to do about stress before. I laughed. I got up from the computer, I walked outside to hang out with some of my closest tree friends, I put my feet up, and I laughed out loud. I laughed at the utter silliness of me. What was I thinking?! This? Just this? All this book promotion stuff is not a problem. This is just learning. All that I’m doing right now is learning. I can do that. I’m actually really good at that now.
My laughter feeds the trees here. And my family. And my friends. And my community. Have you noticed who and what your laughter feeds? Probably you have, I’m a slow learner. This was news to me.
Now that I’m laughing again, it’s so NOT stressful around here right now that we just created a second mini-book, as a free gift, for those who buy the new book. Sarah’s suggestion + my content + Daniel’s formatting and tech skills + an ability to feel the love of so many = a gorgeous new 32-page mini book conceived, created, and finished in under a week. Holy shit wow. So I’m here to tell you that this month two new books, not one, are about to be born. I’d like to introduce you to the first one now. This 60-second trailer captures the feeling of our new book, Unshaken Wonder: Becoming Playful Elders Together. She’ll show up in eBook form April 17 and in paperback form by May 1st.
When you go get her in digital eBook form or print form this spring, then you’ll receive a link to sign up to our Silly Dog Studios newsletter and to receive a gorgeous (thank you Daniel), useful (thank you Researcher me), fun (thank you poet me) 32-page mini-book for free (thank you Sarah). The link to it lives on the Dedication page of Unshaken Wonder. The mini-book, called On Befriending Wonder and Unleashing Playfulness: Twelve Choices to Consider, offers, not surprisingly, twelve choices that we’ve learned to make by spending almost all of our time with playful elders (not taking ourselves too seriously), and within community (keeping our own fears in proper perspective), and by noticing, listening to, and participating in self-organizing groups we’re drawn to (groups whose members are surprised and delighted by what they become and do together). The eBook is already available for presale–11 days early! (Thank you BookBaby.)
Thank you for showing up, listening, and caring about all of that. I’m now off to go learn how to say all of that and more in a frickin’ 100-character tweet. 😉
I walked alone in the
Because I felt the pull of
I knelt beside the
To better see the
And then to my
A warm light touched
And the whole place began to
Or maybe I just
I couldn’t believe my
And dropped down to my
I reached out to
I heard this from a friend in Seattle this week: “I write with a question. After much dithering, hemming and hawing, I have found the key to my book… I would greatly appreciate your counsel on how to navigate the process of getting it published. Finding an agent, self-publishing, Amazon? This is a world about which I know nothing.” Here was my answer to her:
What an amazing place to be: right at the beginning of something new and exciting, feeling clueless, and wide open to learning! Lovely, lucky you. Take some deep breaths, find someone to celebrate, or commiserate, your current state with, and enjoy this moment. I’ll be self-publishing my eighth book this spring, and I’m still far from feeling like an expert. I think I know a few helpful things to share…
The question that you’re asking is a big one. My own short answer is this: center on who and what you love. If you love the process and the people, then you’ll be satisfied (and some days, thrilled) regardless of what happens or doesn’t happen. So part of your goal should be asking yourself these questions as you go: Do I love the process? Am I learning to say goodbye to and let go of what I don’t love? Am I making choices based at least in part on what I most love to do and who I most love to be with? How you choose to publish should reflect who you are: what you enjoy doing, what you’re good at, who you like to work with, who your community naturally is, how you and your community members/natural work mates like to work, and also, yes, at least here in the U.S. in 2018, how much money you can spend up front. I’m a present-moment person, so those are my questions. If you’re a future-leaning person, then maybe ask: Where do you see yourself and your book in 2 to 5 years? Who do you imagine will be your coworkers along the way to get there? Who will you read the book to? Where will you be? How much of a hand do you want to have in major decisions and in book promotion, distribution, and sales along the way? If you’re a learn-from-the-past person, then maybe questions like these are better questions: Who has created books or left a legacy that I respect and admire? What did they do and not do? I suggest that you talk to 4 or 5 people who have published books in the past 2 to 10 years (or longer, depending on you and your subject) related to your subject and genre so you can get a broader picture of why people choose to publish the way they do and get a clearer picture of what it takes to publish (the easier part) and to live an authoring life (the impossibly hard part if you’re not an author at heart).
If you want a really long answer, then here are some thoughts from my experience. There are hybrid approaches now, but these are your three basic choices:
- Big publishing houses. In 2009-2010, I spent about a year and a half thinking about publishing via traditional routes. That is, find an agent, shop a manuscript around, find a big publisher, work with that publisher to produce and promote the book, become J.K. Rowling, and then say whatever you want to say on Twitter without fear because the whole world has your back. In big publisher world, as a first-time author you need an agent to even be heard, unless you’re exceptionally famous or infamous. You also need a significant author platform already in place (this is all the ways you’re already listened to by the masses—such as your own blog, speaking gigs you already do, podcasts, classes you teach, programs you host, media coverage you’ve received, etc.) for your manuscript to even be considered, no matter how good it is. As the most forward-thinking and cutting edge big publishing house editor told me “In this space, we don’t start revolutions. We document revolutions that already happened, because we need to make that kind of money [big money] to survive.” So kind, he was, to say that to me, saving me years of wasted time and trouble! There are thick books of agents and publishing houses published every year to be up to date—you can ask at any bookstore for them, and start there. However, attending a few writer’s conferences is perhaps the simplest way to find an agent. You could try Pacific Northwest Writer’s Association’s (PNWA’s) next writers conference. Most big writer’s conferences set up pitch sessions that you can sign up for and then you get to pitch your book idea or manuscript to a few agents. After about 18 months of exploring this world, I decided that route wasn’t for me. I somehow knew back then that I wanted to be a full-time author: writing book after book after book regardless of what else I was doing. From my perspective back then, the big publisher world felt like choosing to spend my working life on the biggest, slowest (not to mention kind of elitist and wasteful) cruise ship on earth (where authors were deck scrubbers while others drove the ship, made the big decisions, and doled out the wages). I learned that what I enjoy is more like kayaking or sailing with a few friends—a place where everyone gets to be in charge sometimes and people adore and trust each other from the get go for their complementary skill sets. Other authors love the big publisher world. And I get it–I hate doing all the leg work for book promotions. Still, it just wasn’t for me. For one reason, even after you get an agent (which could take years, depending on how much time you have to devote to that), and then get your manuscript accepted by a big publisher (which could also take years), it can then still take an additional 1 to 3 years for the book itself to be published and reach store shelves—and this last part is on the publisher’s schedule, not yours.
- Small publishing houses. There are hundreds, perhaps thousands of small publishers in the US. You can find them by asking your book nerdiest writer and reader friends (and their friends), by searching Google, and also at writer’s conferences. I suggest doing all three if you have the time. I recommend trying to find someone at a local (or emotionally local to you) small publishing house willing to talk to you about their process. Often editors from small publishing houses attend writer’s conferences where you can sign up to pitch a book idea or manuscript directly to them. You don’t necessarily need an agent with a small publisher, although you’ll most likely want an attorney to help review contracts and think about legal ramifications of some choices if you aren’t inclined to research legal questions yourself and don’t have a background in negotiations and/or mistrusting others. Artists, who tend to love and trust for a living, can be wise to partner with one kind person who mistrusts for a living. Not everyone who publishes a book is an artist, of course–you might also do fine on your own. I haven’t yet worked with a small publishing house yet, but I can now imagine doing so in the future. Likely because I’m old enough now that I have a few friends who run small publishing houses. People who run small publishing houses tend to be well, cool, from my perspective. People I enjoy spending time with. People whose passions and skills complement and stretch my own. Working with a small publisher is a far more intimate arrangement. Some small publishing houses publish just 3 to 12 books a year, so if you’re among the chosen, you are all in it to win it for your book–rising or sinking together.
- Self-publishing. This is the wild west of book publishing, and it’s where my own expertise lives. It’s still not simple, but it’s considerably simpler to self-publish in 2018 than it was 7 years ago when I started. Systems that tend toward getting simpler (not easier) with time are where I like to live, I’ve learned–likely because most of the human world is getting more complex right now. There are still emerging and new ways to work in the self-publishing space, and you can try different things with every book you publish (if that sounds like fun, this might be for you). In this space, you are the publisher/big decision maker and often the project manager while others—such as distributors, printers, editors, cover artists, indexers, etc.—essentially work for you. Getting a book to a published state can be much faster here. I self-published my first book in 2012, and I will be publishing my eighth book in March 2018. I chose to self-publish the first seven for many reasons: because a) I wanted to learn the process from end to end, b) I had the mindset (coming out of Microsoft and my doctoral program back then) of experimenting and learning at every stage as a fun thing and also confidence in my own skill set (as a dev editor I’d helped others get their books published via Microsoft Press), c) I wanted to publish some of the books quickly—for particular purposes or for particular people, in the same year I’d written them, d) I had community members with skill sets that complemented my own, e) an ability to ask for help and hire/barter skills and services with friends and friends of friends, and f) I was willing to manage the book as a project and try my hand at promotions/marketing/sales. I was lucky (and naturally inclined) to have people around me willing to learn along with me. For example, people who were editors, illustrators, publications, and manuscript to book and eBook conversion experimentors who were willing to learn along with me and work with me. I also got legal advice, as needed, from a group of attorneys that worked at the same coworking space where I worked–another place we traded services instead of paying for them. We used Amazon’s CreateSpace (book) and Kindle Direst Publishing (KDP) (eBook) for the first seven books because they were the easiest for us (back then) and we had so many other things to learn that we needed easy. They were essentially the printer and online distributor and I myself (with my spouse and closest friends) made the big decisions. We were the publisher.
Another upside to this approach is that it is a relatively inexpensive up front route. I needed that. I’d quit my day job to finish the last year of my doc program and I decided to try to write full time before pursuing another day job. Self-publishing is relatively inexpensive in that, for example, for some books I leaned on my closest friends or my spouse to do publications, formatting, and manuscript to PDF and MOBI file conversions to hand off files to Amazon (bartering their expertise on my projects for my expertise on their projects = free labor for everyone!). I’ve always paid for quality editing, but I’ve bartered my own skills and services for everything else at some point: for example, some of my cover art and promotional materials like postcards and bookmarks. The way CreateSpace and KDP (and many others) work, you pay nothing to them up front. Instead, they take a percentage of every book that’s sold, and the physical books are print-on-demand, which is invisible to anyone who purchases books online (well, except for big publishing company and other traditional purists and book makers who will notice the subtle-to-invisible quality differences). I’ve published several books for under $1,000 this way—paying only for editing and sometimes cover art up front. So this is a great way to start if you don’t have much money and want to experiment. The down side is that you are on the hook for ALL your own marketing and book promotion. Don’t quit your day job to try self publishing, unless you’re already famous somehow. We lost money on my first 3 books as we figured things out. We broke even on books 4 and 5. We made a little money on book 6 the first year. A little more on book 7. We have big plans for book 8! Another upside is that we can promote and sell these books forever (if that sounds like an upside to you, you might be a self publisher). All our books are residual income for us now. Tiny amounts trickle in each month, and more money shows up whenever we do book readings, teach workshops, give interviews, do online training, and so on (basically, whenever we show up in person we see bumps in book sales). With a traditional big publisher, to the best of my limited knowledge, your book might be promoted in a big way for just the first year (or a few years if you’re lucky). If it’s not selling well, they’ll pull it at some point.
Things have evolved quite a bit in the self-publishing world since 2012. Personally, I find working with small organizations more fun and interesting, so I’ve been looking at For my eighth book, here in 2018, I’m using BookBaby. They can handle cover art, publications/formatting, editing, conversion to ebooks, and getting it out onto all the major online booksellers and into the hands of the publishing house that makes it possible for bookstores to order and stock your book (Ingram). (Basically, all the things I’ve learned I don’t love doing or managing myself.) You can pick and choose services too: for example, I used my own editor, not theirs, since as a former editor I have dozens of editor friends–from proof readers to copy editors to dev editors. And BookBaby can connect you with book marketing/promotions consultants that charge by the hour to give you advice about how to focus your efforts and best market and promote your book. (I would have killed for that back in 2011 and 2012 and 2013–back when I was trying dozens of things and failing at almost all of them.) I’ll let you know how it goes with them. See, even after eight books, there’s still much to learn and experiment with here in self-publishing land! There are other end-to-end self-publishing services companies like BookBaby out there now, too. There’s a more local one in Portland that someone suggested to me recently: Luminare, I believe their name was. I may check them out for the next book. BookBaby is based in New Jersey.
I love self-publishing because as the publisher I automatically own all the content and can do whatever I want with it, when ever I want. There are no complicated negotiations that require an agent and few (typically) that require an attorney. BookBaby’s staff work with me: I don’t work for them. For my latest book, which is twice as long (120,000 words) as any other book I’ve written, I paid ~$1,300 for editing (which is low, thanks to my connections and friendships) and I expect to pay ~$1,500 to BookBaby for covers, publication/formatting/proofing, and getting the book to the dozen or so distributors. I now work with my husband from our own work/home studio space, Silly Dog Studios. We promote our books via an email mailing list, social media, friends, prereaders (who get a free book for providing reviews online, even bad reviews–I’m not Trump), local booksellers, in-person book readings at places that make the most sense for each particular book, as part of workshops and classes we teach here at Silly Dog Studios, and at the two big Whidbey Island farmer’s markets April-October. I’m looking into Indiebound right now to move future marketing to a space I more naturally fit than giant Amazon (who is too big to care, for example, that another Lori Kane writing 5-page terrible erotica “books” shows up in searches for me–the people may empathize, but the organization can’t, it’s just too big to make changes for one author). We also have many artist, writer, neighbor, and other small business owner friends who naturally promote books for us, too. Here in very small business land, we all promote each other’s work. That’s how we survive. More importantly, that’s how we like it and how we thrive. (I’m far better at promoting group work/community-level work and other’s work than my own individual work, which actually works just fine here in self-publishing land–I don’t have to change who I am in ways that feel unnatural to me. Daniel and I also plan to make the individual chapters of book 8 available on my website, so I can also sell individual chapters to people who don’t want the whole big book, too. My latest book is creative non-fiction and the chapters stand alone well. It’s a busy world. My audience may want just two of the 9 chapters–that’s perfectly fine with me. We’re planning to host workshops here that use the book’s content as the base. We make all our books available for sale to those who come to workshops and events here. FYI, [person-specific suggestion for my friend who asked the question] are terrific places for book readings and book sales about [your subject]! Just remember to bring cash/change, since many people there don’t want to swipe their credit card into a device on somebody else’s smart phone to buy a book!
In my professional opinion, the process to have a great-selling book, become a well-known author, or to make a full-time living as an author takes between 8 and 20 years of dedicated hard work and learning to ask for and accept community help at every turn, regardless of which publishing route you take. If you’re not an author at heart, you will fail regardless of which approach you try because your heart won’t be in it. If you are an author at heart, you will succeed regardless of which approach you try because you won’t give up no matter how many failures and rejections you encounter and you will draw people to you who will support you in your efforts and you’ll support them in theirs. You have to grow through the process of publishing and becoming an author and that growth takes time—it can’t be rushed by mere humans. I know a few exceptions who got there faster than 8 years, but those exceptions work their BUTTS off night and day, almost round the clock, 365-days per year to make that “exception” happen. As a secondary caregiver for one parent with Alzheimer’s disease and a primary care partner for the other parent (who is exhausted from 15 years of caregiving), not to mention as someone who needs a well-rounded life outside of constant book promotion to create great books in the first place, I haven’t had that kind of time to become exceptional quickly. 😉 Today, that’s fine with me. Exceptional isn’t a thing I aspire to anymore. Here in Lori Land, exceptional is a thing we all naturally are when we slow down long enough to notice.
An up side to self-publishing is that you can get a published book in your hands much faster than the big and small publisher routes. The down side is that if you’re not interested in doing ongoing community building, personal growth, marketing/promotions, and even sales some days, then you can end up with a finished book that almost nobody knows about or cares about outside of your own family (I have several of those). The biggest up side to self-publishing is that you are clearly the primary decision maker. As such, you naturally focus on what you love about the process, you learn to readily ask for help (or you get nowhere fast), in regularly asking for help in your community, you fluidly pull people to you who you need to work with next (and they need you), and you end up naturally spending quite a lot of time with people you love and respect. So if you keep at it through all the failures and second-guessing yourself and kicking yourself for trying things that you knew in your gut wouldn’t work for you, then you will one day find yourself surprised–as you type the words to your friend–that you now have a custom-made-by-you, for you, totally unique to you and kick ass author platform (aka, author’s life, aka, the life you truly want).
Loving the process and loving all (ok, almost all) of the people you work with doesn’t just makes all of your books (even the money losers) meaningful and worthwhile endeavors. It also lands you where you truly want to be, doing what you really want to be doing, wearing what you really want to be wearing, and creating the work that you are on this earth to create. Surrounded by people doing the same. Most days. Huh, wow–I think that’s where I already am.
Thank you for the big question. I hope something in there helps!
I want you to celebrate yourself.
Shake off your dust.
Find fierce stones that speak to you
hold them, gentle now, then
drop them into rivers
wrinkle your wide-eyed face to focus
as they sink
oblivious to the current.
Muck arrives through always-clear
water and we receive her nourishment: learning again
what we’re here to attend.
Listen until you can hear
your own cells singing, the blue bird said to me today.
Then, sing. Sing! Here, like this…
Dust burns wild here. The smoke
makes us wretch, too. Still
I offer my tears and somehow hosts
of forgotten children and ancestors
heal right along with me.
Our tears aren’t pulled from us by
some too-strong past, group, or being.
We offer them. We offer them gladly, most days.
So, I speak just to you now—
one offeror to another.
You are being called, right here.
Listen again to one blue bird on a gray day.
Attend her. Attend the voice that comes to your window.
Could you have been wrong about her? Is she really the bully
you imagined her to be yesterday?
All she seems to ask me now is this:
Step into the world.
Get closer. Listen. Celebrate yourself.
Celebrate until all the birds
arrange themselves comfortably
on nearby branches to hear you,
joining the celebration and singing the song
that you learned from them…
Shake off your dust.
Let’s celebrate ourselves together here.
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