I’ll be honest, I have been one wound up schnoodle recently. I am still as fluffy and lovable as ever, but my main hooman (the mom one) has been using – ahem – inappropriate language in my company (in fact, directed at ME, I dare say) way more than normal these days.
In my defense, the weather is getting warm and there are SO. MANY. GOOD. SMELLS. Grass growing, bugs flying, flowers blossoming, other animals out and about. A veritable cacophony for the senses. Plus the bunnies taunt me all day long, sitting just outside my window chewing on MY grass. And then the hoomans keep putting meat on the firey thing on the back porch causing these incredible aromas to waft through the air (who am I kidding? Raw or cooked, that meat smells damn fine to me!).
What is a dog to do? I am not a guy to be vague about what I want. Some may say I have a stubborn streak. Perhaps that I am a bit needy. I believe in speaking my truth. And, the truth is, I want their dinner, not mine. Needless to say, whining (on my part) is involved and then cursing (on my main hooman’s part) follows. So undignified.
These episodes always end with me being sent to my Place cot. At first I act like I’ve never heard that word before and I have no idea where I am supposed to go, but then I have a “light dawns on Stonehenge moment” and I leap over there with an expression like, “Here? Is this what you meant?” I do enjoy a bit of improv theatre. Then I am told – quite emphatically, I might add – to SIT. And then to Stay. There are treats involved so I am all in on this game.
What’s really amazing is that within seconds of sitting on Place (aka a forced time out), I feel so much better. Almost like the whining and fussing is some sort of out-of-body experience and Place gives me a moment to pause and reset that puts me back in touch with my inner schnoodle. One minute I am pacing and whining and begging for hooman food and the next I am lying down on my cot and this big, deep sign spills out of me. Ahhh, what a relief. All that frenetic energy just floats away.
It occurs to me in my moments of Zen – is it me that needs Place, or is it my hooman?
Because, if we are being honest, she seems a little wound up, too. It’s, like, way too easy to push her buttons.
My main hooman says I am driving her to drink, but if she would just pay attention she would see that I am showing her the path to inner peace: find a peaceful place, sit still, and breathe. Anxiety melts away and you emerge from this pause with more clarity and more mastery of being instead of constantly doing doing doing.
If nothing else, I am here to teach.
My advice: send yourself to Place and take a deep breath. It takes practice to learn how to do it for yourself, so have someone send you until you figure it out. I highly recommend extorting them for treats as part of your healing process.
I say “should” all day long. As in: “I should eat better.” “I should cook more healthy, homemade meals” – or the corollary – “I should get less takeout.” “I should write a book.” “I should be studying Spanish.” “I should be more disciplined (if I were I’d have written the book AND be fluent in Spanish.” “I should get some exercise.” “I should work full-time.” BUT ALSO “I should spend more time with my kids.” “I should be more present.” “I should write a new blog post.” “I should finish the stack of books by my bedside table.” “I should clean out the basement.” “I should be – fill in the blank – better, smarter, faster, more…” Except when “I should be quieter, more thoughtful, slow down.”
In sum, “I should definitely not sit still or pause to take a deep breath. ” Relax? Hahahahaha. PRODUCTIVITY is next to godliness. Or is it?
While none of the above cause obvious harm (except the part where I forget to breath in my pirouetting around) and all are fine aspirations (feeding my family healthy meals, for example, leans more toward the worthy obligation side of adult shoulding), the use of the word “should” results in a sentence that means something very different from the same sentence using the verb “want.” Not to mention that some of my shoulds are downright contradictory.
Look. Being busy and productive isn’t a bad thing. I like to be busy. It’s the tone of the busyness directive, and who is setting the agenda, that can be problematic.
Should is an incredibly strong little word. Google tells me that it is a modal auxiliary verb, which I don’t remember ever having learned in my 8 years of Catholic school grammar (though, obviously, I SHOULD remember it and probably did learn it, if nothing else through example since Catholic teaching is based on should). Though should can be the past tense of “shall,” it is used primarily “to indicate obligation, duty, or correctness, typically when criticizing someone’s actions.” Trust me, should can be a powerful and judgy dictator. It implies that what you are doing really isn’t sufficient, and that there is more or better or different to be done. Like, get it together, you disappointment. Which is basically the shortest synthesis of Catholic school education there ever was.
When should is in charge, you cannot win.
Should brings even more heat when you move into the past. When you are shoulding yourself at least there is still hope that you could do or be better in one of the many ways you cajole and judge yourself. The advanced phase of shoulding results in complete admonishment for the lost cause that is you with “I should have done X!” – ahhh, it’s all so obvious now, but it’s in the past and I really should have known better in the present. This tense of the verb is sometimes called the “modal of lost opportunities.” That sounds about right.
Like I said, some shoulds are necessary. And productivity is great. But it’s really important to bring awareness to what you are running around in service to and who is in charge of that action and directive that is key. Be the master of your own destiny! Also, saying no with no regrets is totally a thing. Or so I have heard.
Listening to oneself – really listening – is a rebellious act as well as an act of love. That’s my kind of rebellion (hashtag #shouldrebellion).
If you are a person who intends to live a long life, or if you know someone who is already living or intends to live a long life, gather round.
More than 5 million Americans 65 and older has some form of dementia, according to the CDC. That number is expected to triple by 2060. TRI-PLE. Basically, if it hasn’t hit you yet, it will. And when it does, if you stop reading here you will learn the hard way that you are basically stuck between a rock (not ideal care options) and a hard place (going literally broke to pay for care). And you’ll also miss the 80s flashback at the end of this post.
Long-term care for people with cognitive diseases such as Alzheimer’s and other dementias in the United States is totally broken. This may be true for other conditions, disabilities, and age groups as well, but dementia is what I know. Please refer to our broken health care system for myriad examples of similar dysfunctionality.
A couple of weeks ago I spoke with Paige Sutherland from NPR’s On Point about my experience with long-term care. The episode – Is it time to rethink how we care for dementia patients? – focused on the quality of care for those with dementia, highlighting unique places that have done it differently (village-style settings, more autonomy than is perhaps typically offered in memory care). Check out it and other related resources on my Podcasts, Articles, Books and Websites page.
Personally, it was heartening to hear my mom’s story and voice out in the broader world again. She doesn’t speak much and hasn’t used a phone in easily more than five years so unless you visit her or work with her, her disease has cut her off from the outside world. To hear her name and voice on the radio was nothing short of mind-bending and thrilling.
I came away from the interview, though, realizing once again how complicated and multifaceted dementia and dementia care is. This particular OnPoint episode highlights some of the issues and opportunities with the disease and long-term care, but all the myriad tentacles that touch a family’s life with a dementia diagnosis really requires a multi-part series.
Dementia, of which Alzheimer’s is one version, is a slow-moving tragedy for most (early onset tends to move more quickly). While it slowly destroys your loved one’s mind, it disrupts family finances, implicates the U.S. medical system (which seems bent on punishing people for getting sick through no fault of their own), requires patients and their families to go bankrupt to receive government support. Let’s not even talk about lost wages (and ultimately professional trajectory, in some cases – not to mention sanity) for the family member/person responsible for shepherding the care of their loved one. Or the fact that many private caregivers (“home health aides”) sent through various agencies do not make a living wage, do not have health insurance of their own, do not receive professional training, do not have retirement plans. They typically work multiple jobs just to survive, often taking advantage of having a client with cognitive impairment to nap. Many (most?) are immigrants. Most don’t drive. And none are authorized to give medication. And this just scratches the surface.
The federal government does not recognize power of attorney (though everyone else does). As power of attorney, one has access to bank accounts and all sorts of decision-making power, but one can’t get a Medicare statement to appeal a charge or an end of year social security statement for tax purposes without cooling one’s heals for several hours at a Social Security office. Time, you know, generally, that caregivers don’t have to spare.
You have to be broke to get a Medicare bed at an assisted living facility. And there’s a five year look back so it’s not like you can move around assets you may have wanted to save for, I don’t know, your kids’ or grandkids’ college tuition or your own retirement or something like that. I mean, who doesn’t want to face bankruptcy in their twilight years? Note: I spent a lot of time trying to double-check this and to understand the Medicare website. I used a website called Boomer Benefits that translated what the Medicare site was saying into English I could understand. I am relying on them for accuracy at the moment. As a not-expert in geriatric care or law, this is how much of the whole last ten years has gone. Research on the internet, read lots and lots, talk with others, get the best understanding I can muster. An elder law attorney would have answers, and also billable hours. See footnotes below.
If you choose – or need to go to – a private care facility (see above: not yet broke), and by some miracle your loved one just keeps on living for no good reason other than that they have this crazy will to survive, you will almost undoubtedly run out of money before anyone steps in to help you. In my case, I created a budget for my mom’s care expenses early on and I update it annually. I always trend her costs out assuming 3% inflation annually, which is typically a fairly reasonable rate. Guess what I did not factor into my budget? A pandemic. Inflation. Needing to increase staff wages to retain them (honestly, surely that is a good idea anyway. Why is it that caregivers and teachers and all the people who do the most dedicated, intimate, meaningful work for our families and loved ones are paid the least? How messed up is a financial system that values money over, I don’t know, values?).
The truth is, you don’t usually know much about this until you’re in it. And when you are in it, it’s a really tough time to learn about it or to change the status quo. I was thrown into this role by circumstance, and I do my best to honor my mom and her story. Along the way over the last 10 years I’ve tried to improve, to the extent possible, the road ahead for others in similar circumstances through my work as a Patient Ambassador, as a writer, when opportunities like NPR’s present themselves, and when people call me asking about the care my mom receives because they need to consider what comes next for their loved one.
If 9 to 15 million Americans are going to be impacted, depending on who you ask, this disease is going to affect us all one way or another eventually. We need to work together to improve care models and support, both financial and emotional, to help families function until there’s a cure. It’s a terrible feeling to be forgotten.
I know this isn’t about dementia, but it fits (and it’s a great song):
“Most assisted living facilities provide what is considered “custodial care.”
Custodial care typically includes assistance with activities of daily living. These are tasks like eating, bathing, dressing, and using the bathroom. In some cases, it can even include health-related activities people usually manage on their own. Some examples would be taking daily medications or using eye drops.
Custodial care can be either long or short-term, depending on your condition. It can be provided in an assisted living facility, nursing home, or even in your own home with a home health aide under certain circumstances.
However, if you are in an assisted living facility or nursing home, Medicare still covers all of your Part A and B medical needs. This includes doctor visits and medically necessary therapy services, plus your prescription medications if you have Medicare Part D.”
Lately, when I take a good look in the mirror, the phrase that comes to mind more often than not is, “Dude, what happened?” Since I think I am still 25, that is, in fact, the exact expression. Sometimes it’s just “dude,” sometimes it’s a simpler, more inquisitive “huh” sound. But the confusion and questioning as I inventory my gray hairs and wrinkles is the same.
Where – and when -, exactly, did all these pinch points around my eyes and mouth develop? I barely noticed. Somewhere along the line time started running away from me…and just kept going! I remember when I was a kid and time stood still for days on end – long, aimless, completely boring days, especially during the sweltering summers of my childhood. I’d complain to my mom that I was bored and she’d tell me she could find me work to do around the house and, voila, I would instantly be cured of boredom and find myself somewhere else to be and something else to do. In hindsight, that was a pretty predictable outcome (my mom knew what she was doing!). These days I can’t remember the last time I had the occasion to be bored.
Needless to say, a fair bit of time has passed since I was a little girl and even since I was 25 (ho hum). I mean, literally, that was more than two decades ago. I don’t know if I’ll ever be able to wrap my head around that.
What I do know, with absolute certainty, is that I have earned every one of these wrinkles. Sure, some probably came from poor sunscreen choices when I was a kid. But a lot came from standing on the precipice of a new adventure or from facing into the difficult stuff that inevitably comes up in a life and not turning away because it was too hard or painful or might cause me to break (or wrinkle). I have broken down and gotten myself back up enough times now that I guess I should know I have some serious years under my belt.
Though I may have the odd Botox dream (ha ha), in fact each wrinkle is a hard-earned badge of a memorable life. It’s the sign of time spent leaning in to all of the adventure, opportunity, and challenge that come with living fully. Not to mention the laughter. As Lori McKenna so pithily says in People Get Old, “Every line on your face tells a story somebody knows.” What a wonderful sentiment.
From heartache to adventure, hard work to achievement, sunny skies to skinned knees, those wrinkles are the story of your life written across the canvas of you. Live and lean into those lines.
Last year the holidays were tough. Omicron began picking up the pace somewhere between Thanksgiving and Christmas, and the idea of being together with friends and family, which had so recently seemed possible, was suddenly as far off as ever. Again. I was so sad to have to cancel all of our plans and to be returned to this place of fear and isolation. And, worse, once I got to that place, I couldn’t remember anything good at all that had happened in all of 2021. Surely it wasn’t all bad? Right?
I have written about the negativity bias (Utterly Imperfect and Always Seek the Sweet) before, and it’s truly fascinating how hard it is to find positive memories or thoughts when times are tough. Our family started a gratitude jar last Christmas as an antidote to the negativity that has really swallowed us whole for the last several years. The gratitude jar (I called it our Glad Tidings jar) partially forced us to make a conscious effort to be aware of our blessings, no matter how minute, and also created a steady supply of all the good things the year brought us, no matter the conditions or circumstances of the end of 2022. The glad tidings jar sat on our kitchen counter with a notepad and pen next to it all year. Anytime any family member was so moved they could add a little note.
In the end, this year was mostly, kinda, normal. We were able to celebrate Thanksgiving and Christmas with family in a way that was very reminiscent of pre-pandemic years (no masks, no distance, much laughter and noise and good food). The year also brought its fair share of hardship and health issues and loss. Life showed up in all its fragile beauty in 2022, as it always does.
I am happy to see that we have a full jar of notes about the blessings in our life. I am excited to look back and remember both the amazing things as well as the mundane that brought us joy and gratitude this year, from reprising international travel to finishing an entire school year uninterrupted to our first big snow storm to, simply, it’s June :-).
Here are a few random selections from the jar:
January – “Reading the Adventures of Tintin!”
February – “Sponge Bob the Musical”
June – “I am feeling thankful for having such a loving and supportive family.”
August/September – “COVID came…and left”
This is one new year’s tradition I can get behind and bring forward into 2023.
In November, I traveled to Guatemala to attend the MAIA Impact School graduation. It was a whirlwind three days of travel, meetings, and connecting (or reconnecting) with Girl Pioneers (GPs), MAIA staff, and fellow Board members.
It’s been difficult to put into words all of my thoughts and feelings from this particularly poignant event in the history of MAIA, the Girl Pioneers, and their families on top of a return to Guatemala after a four year hiatus. Here are a few highlights:
– 41 Girl Pioneers, escorted by their families, graduated from high school in November 2022. Many of these young women are the first in their families to graduate from elementary and middle school, let alone high school. Despite astonishing adversity that increased during the pandemic, when provided opportunity, these bright, courageous pioneers have seized it. They will go on to attend university, participate in paid internships, and enter the formal economy.
– MAIA has chosen new leadership, turning the Co-Executive Director role over to Andrea Coche and Martha Lidia Oxi. This transition makes MAIA the first organization of its size in Guatemala with an executive leadership team that is 100% indigenous. Travis Ning, the out-going co-ED, writes, “We have long said our goal was to structure MAIA so that Girl Pioneers could one day hold any position in the organization. This leadership transition signifies that we have completed this task.”
-The Volcan del Fuego near Antigua provided a little fireworks display and Lake Atitlan and the surrounding volcanoes delighted with their spectacular beauty.
– The reunion with colleagues and friends and the reprisal of human connection and some post-COVID-years normalcy was incredibly invigorating.
If ever my passion for the work MAIA is doing and all it has achieved as an organization flagged because of the many distractions and issues that come up over four years in one’s own life, returning to the school and connecting again with the staff, GPs, and fellow Board members refueled me completely. Even though it was school break, there were some programs running. Being able to see the school filled with students and the vibrancy of what happens there during the school year was rewarding. The school has grown into the building since I was last there.
While all of the challenges Guatemala and the school and its students face had been laid out to me in one way or another through news articles or program notes or discussions during Board meetings, to physically be present in the place, to connect with the students and staff who have lived through these challenging times, and to hear it from them and see it firsthand was powerful. The school’s work has become ever more critical in the face of more families slipping into extreme poverty, more issues with malnourishment, more clarity in terms of the entrenched barriers the GPs face as they pursue advanced degrees and formal employment.
If you have ever wished for the world to be more fair and equal, the MAIA Impact School model creates the change so many of us dream of seeing in the world. In the face of great obstacles, there is so much to celebrate and to be inspired by happening in this little school in Guatemala.
I invite you to invest with me in this incredible organization. Together we can break cycles of poverty, discrimination, and inequity and, like the Girl Pioneers, be part of the solution. https://www.maiaimpact.org/be-part-of-the-solution
Oh my gosh, it’s been a long, long time since I have sat down to write. Even sitting here now, putting pen to paper, all I feel is resistance. I changed the order of the widgets shown on the website’s pages before I finally opened a blank document to start writing.
What happened? Nothing really. Or nothing specifically. A huge wave of inertia crashed over me and I could not write anymore. It’s been a dose of living outside the 4 walls of my home again and being legit busy (and oddly out-of-shape with the calendar juggle – or am I busier than I remember being before?). Added to that I started to feel like I have nothing to say that’s worth sharing. I took all these writing classes, started to overthink it, got frustrated (and distracted), and promptly stopped writing. And that’s kind of the story of my average Joe-ness. I get just so far with something, get bored or frustrated, and move onto something else (currently I have decided I will learn Spanish).
Ah! But here is the unexpected part that I’d like to think shows some growth – I am onto those old habits and I have decided to not, in fact, give up on writing (or Spanish!). This old dog can learn new tricks – and perseverance is the name of this long haul game called life.
I can’t say how often I will write or when I will next grab the time needed to wade through all the resistance and put pen to paper, but I wanted to say hi and I’m still out here and that I hope getting caught up in the messy confusion of life – and finding one’s way back! – resonates.
I am borrowing from Matt Haig’s The Comfort Book for today’s Oxygen Mask Moment, as the end-of-school-year madness (and weeding my garden) absorb all of my “discretionary” time. Plus, it’s so, so good.
To the below I would add, it’s not only okay, it’s better. So much more genuine and real.
It’s okay to be broken.
It’s okay to wear the scars of experience.
It’s okay to be a mess.
It’s okay to be the teacup with the chip in it. That’s the one with a story.
It’s okay to be sentimental and whimsical and cry bittersweet tears at songs and movies you aren’t supposed to love.
It’s okay to like what you like.
It’s okay to like things for literally no other reason than because you like them and not because they are cool or clever or popular.
It’s okay to let people find you. You don’t have to spread yourself so thin you become invisible. You don’t have to always be the person reaching out. You can sometimes allow yourself to be reached. As the great writer Anne Lamott puts it: “Lighthouses don’t go running all over an island for boats to save; they just stand there shining.”
It’s okay not to make the most of every chunk of time.
I mentioned the book The Soul of Money by Lynne Twist in my last post, Sometimes Asking is Giving. As Ms. Twist explains, “What’s poor is [people’s] circumstances, not them, and the unlocking of a vehicle to change circumstances is a gift; the radical truth about money and life is sufficiency. If you clear away the mindset of scarcity, you will find the surprising truth of enough. When we recognize enough, when we have more than enough, that excess, that’s for others.”
I shared a quote about one’s attitude two weeks ago, and this is related. It’s a mindset shift, from scarcity to abundance. It changes everything in how we approach life, ourselves, and others. When you realize you have enough, that you are enough, you can give of yourself more. Does anyone else remember Sark? This particular quote about Enough is from her book Inspiration Sandwich, which was also the genesis of much hilarity about the complete and utter dump in the deep woods of Maine that my friend Jen and I lived in one summer, which we affectionately called the Magic Cottage thanks to Sark. It was magical all right, hornets and mice living in the walls and all. But that’s a story for another time.