Tag: Connection

Don’t You (Forget About Me)

Don’t You (Forget About Me)

Meg

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.

Fun facts:

  1. 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.
  2. 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.
  3. How about losing out on both your family home and potential income for a loved one’s care due to a parent who didn’t pay their mortgage, unbeknownst to the children, and the house is foreclosed on. Listen here for more on How An Older Person’s Money Errors May Be a Sign of Some Sort of Dementia.
  4. 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):

Footnote

“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.

Medicare typically does not cover any costs associated with custodial care if that is the only type of care you need.

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.”

Oh, the Wrinkles

Oh, the Wrinkles

Meg

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.

Photo by Engin Akyurt on Pexels.com

Gratitude Jar

Gratitude Jar

Meg

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.

Happy New Year! Wishing glad tidings to all.

Photo by Alexas Fotos on Pexels.com
We Are the Solution

We Are the Solution

Meg
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
Sometimes Asking is Giving

Sometimes Asking is Giving

Meg

The other day I was paddle boarding with a friend on a particularly hot and blustery day, stuck on my knees because the wind and chop were so strong that I risked tumbling into the lake if I stood up. After 20 minutes paddling into the wind, I looked up only to realize that I was a few feet further out from shore but still parallel with the dock. So much effort, so little progress, and, honestly, that relentless wind made me feel vulnerable and exposed even though I could have just let it blow me back to shore and call it a day.

As I dug my paddle deeper into the water to renew my effort to gain some forward momentum, it made me think about the extraordinary headwinds indigenous Guatemalan women deal with every day, and what it would be like to be stuck right where you are from the moment you are born, conscripted to a life of poverty, limited agency, and lack of opportunity. Young women in rural Guatemala face quadruple discrimination from the day they arrive on this Earth: they are poor, they are Mayan, they live in a rural area, and they are female. The MAIA Impact School works to change that by connecting the latent talent that exists in rural Guatemala but has been overlooked for generations with opportunity, starting with access to robust education through high school and aiming for university studies and access to formal work opportunities (as opposed to remaining in the informal economy, which is much more common, precarious, and poorly paid).

Each of MAIA’s Girl Pioneers (or GP’s, so called because they are pioneering a completely new path for themselves, their families, and their communities) trajectories has been astonishing. Though the wind remains incessant, there’s a flotilla of support, guidance, and information available to each of them about how to improve one’s technique, navigate challenges, find balance, and move forward.

Photo by Mat Brown on Pexels.com
Photo by Zadok P. on Pexels.com

In MAIA’s first class of high school graduates, a GP won a 4-year scholarship to college in the United States through She Can, an organization that builds female leadership in post-conflict countries. There are still so many hurdles for her to leap over and hoops to jump through before this opportunity becomes a reality, including the SATs, the bane of most high schoolers’ existences. Imagine being the first person in your family to go to high school, let alone college, and trying to take the SAT not in your first language, nor your second language, but your third language. More headwinds.

Because the US college process is so unique and challenging, with the SATs in one’s third language adding an extra twist, MAIA’s US Executive Director asked the Board if anyone knew someone who provides one-on-one SAT tutoring. I texted my neighbor, who is a college counselor, and he recommended Summit Educational Group. I googled them and cold called them, stumbling over my words as I tried to explain what MAIA is and does succinctly and clearly, who the GPs are, what the need was, all the while dreading the eventual question of cost. I asked not knowing what to expect and feeling like I was asking a lot. I was glad to be on the phone when I said the words “pro bono” because my face burned bright red and my armpits got sweaty. The gall of calling a complete stranger and asking for a favor – and then asking for it for free! Completely brazen.

But then, incredibly, they said YES. Yes, we will offer 22 hours of our time free of charge to provide the tools and resources this extraordinary young woman needs to continue along her path. That yes made my heart sing, astonished that this might actually happen and truly touched to experience the goodness, kindness, and generosity of other humans.

Several weeks ago, two MAIA staff visited the US for a conference. While they were here, we thought it would be good to meet and thank the Summit Education team in person. At our meeting we were able to give them a little more context about MAIA, rural Guatemala, and the GPs. It was the appropriate, polite thing to do in thanks to an organization that gave so selflessly on our student’s behalf.

But the part that struck and surprised me most that has stuck with me was how powerfully resonant and moving this connection to Guatemala was for them. Though they had no prior connection to MAIA or to Guatemala, while I was busy sweating through my shirt feeling awkward and queasy about my bold ask, they weren’t asking themselves if at all, only how. In fact, the response was more like:

“We don’t often get the chance to help a student like this.”

“This whole experience has been the highlight of my time here at Summit.”

It turns out that my ask was a give. Your read that right. By asking, I gave the gift of meaning, joy, and connection. By connecting, we build bridges and forge deeper understanding, expanding our own world and worldview. The wind may not die down, but if we work together we all make more forward progress.

Asking for help is hard. It’s challenging to separate a need from feeling needy. I find it easier to ask on behalf of someone else, certainly on behalf of a cause that’s bigger than me, but it’s still hard. It strikes me now that while it is so hard to ask for assistance in so many aspects of life, sometimes – often? – the asking creates an opportunity to give that is meaningful to the giver. As Lynne Twist writes in her book The Soul of Money, “this unlocking of a vehicle to change circumstances is a gift.” It’s a remarkable, empowering twist and the ultimate oxygen mask moment.

OMM – Snowy’s!

OMM – Snowy’s!

Meg

A Snowy Owl snuggling in the dunes, an elegant, mysterious, beautiful creature.

There is so much novel and interesting out there in the world, sometimes nestled into a dune on a windy day, sometimes hiding in plain sight on your commute to work. Being aware and alert and curious brings discovery and freshness to all aspects of life.

This has been another edition of Oxygen Mask Moments by Meg

Breathe.

You will be alright.

Training for Life

Training for Life

Meg

Have you ever trained for a marathon? I have not (and probably never will). My body starts to hurt around mile 3 and that’s that.

My husband is a marathoner, though, so I have an up-close window into the sport and I’ve learned some important things about life through the lens of marathon training that are relevant even if you aren’t a runner. Even if you’re thinking “marathon shmarathon, running 26 miles is nuts,” keep reading.

To be able to run 26.2 miles takes MONTHS of training, discipline, and dedication. At their peak training, marathoners are running 40, 50, 60 plus miles EACH WEEK. If you happen to live in New England, training for the Boston Marathon, which happens in April, requires running in truly atrocious weather (think freezing cold, ice, and snow).

As fun as that doesn’t sound, for my husband (and clearly thousands of others), the allure of the storied, challenge-of-a- world-class Boston Marathon is like a gravitational pull. He ran it a couple of times in college, but a major injury in his 20s sidelined him from distance running. He has been a reliable fan ever since. When we were still dating, we spent an April afternoon sitting on the curb at the marathon halfway mark eating sub sandwiches and cheering for the runners. That was my first marathon, and every year since we look forward to Marathon Monday.

Because the Boston Marathon is more than a long run. For elite runners, it is a world-class race. For charity runners, who have dedicated months of their lives to raise money for their charity and to train for this superhuman athletic endeavor, it’s the challenge of a lifetime. Many of these runners have compelling, sometimes earth-shattering stories about why they are running or who they are running for. For the locals, it’s a rite of spring, a community-gathering on a massive scale with a festival-like atmosphere. Friends and neighbors emerge from the hibernation of a long winter, joining together along the race course to rally the runners toward the finish line.

Profiles of Boston Marathon Charity Runners for Mass General Hospital at the hospital’s Coffee Central

Over the almost 20 years that we have been cheering on the sidelines, my husband has mentioned wistfully that he wished he could run Boston again. In late 2019 he decided to give it a shot. He trained as a charity runner, but just before his peak run in March 2020 the COVID-19 lockdowns began. The Boston Marathon was cancelled for the first time in its history. That fall, the Boston Athletic Association offered a “virtual” marathon. So he trained for that, running five 5.24 mile loops around our neighborhood. He finished, and many neighbors and friends came out to cheer (from a distance), but it wasn’t the official course with the Boylston Street finish and, it turns out, it’s not really the same.

So he trained some more. He ran a different marathon in the fall of 2021 to attempt to qualify for Boston, but hit the wall at mile 22 and could not keep his pace. He was determined to run the Boston Marathon in April 2022, though, so he found another charity with marathon bibs and committed to raising money for them.

This time he decided that to avoid hitting the wall, he would train with more miles than ever. He ran over 350 miles by his peak run. He ran in ski goggles in the snow. He ran in small loops near the house in case the weather turned too treacherous to continue. His nutrition was fully dialed in.

And now April 18 is on Monday. There’s a flutter in my chest just thinking about it. We have both dreamed about this day, he to finally cross the finish line on Boylston Street one more time, me to cheer him along the course where we have cheered for so many.

I caught myself a couple months ago projecting narratives about Marathon Monday, from the weather to the crowds to the smile on my husband’s face. I noticed myself weaving this tale of glory and triumph about April 18 and realized what a good fiction writer I could be. I mean, how could I know what the weather in Boston would be like in April!?!? That’s a fools errand within days of the event let alone a month ahead of time. If you want a lesson in things you cannot control, New England weather is a good one.

But Monday is supposed to be a perfect day for marathoning, 55 degrees and partly sunny. It should be perfect.

And I still got the story wrong.

Long story short, after complaining for a couple weeks about his ankle feeling funny, my husband was diagnosed two weeks ago with a large blood clot in his leg. He went from running 50 to 60 miles a week to lying on the couch with his leg propped up on a pillow, sleepy from a high dose of blood thinners. No marathon. (And, no, it’s nothing to do with COVID.)

So this is the lesson, or one of them: the race was always going to end. It’s the culminating achievement of months of training, but there is the day after and the day after that. And ultimately, hopefully, that’s what you are training for – the long game, life.

The truth is, the structure and rigor of marathon training kept my husband emotionally and physically fit throughout the rollercoaster ride of these two long pandemic years. It got him out of the office and outside during a time when it was particularly easy to lose track of the days let alone when you last left the couch. The deadline of this particular marathon forced him to figure out what was wrong with his ankle quickly. In another context, it would have been easy to assume it was nothing, which could have been truly catastrophic.

Of course these last two weeks have been a doozy of emotions. That marathoner’s rigor runs hard up against controlling outcomes if you are just disciplined enough. But life has a funny habit of getting in the way of our plans. So we find ourselves holding both grief and gratitude in the palms of our hands. It’s that old tenet of both/and. It’s both extreme gratitude for the clot being found with medication to stabilize it. AND, it’s deep grief and disappointment over getting so close to this marathon yet again, coupled with the worry and processing of the actual diagnosis. Life is full of unexpected twists and turns, disappointments and challenges. Ultimately, I guess, what else would we be training for than to have muscles to flex, resiliency ones and physical ones, when we need them most?

Good luck to all the runners on Monday! We will be basking in the vibe of the event and cheering hard at the halfway mark – and likely shedding a couple tears as well. Both.

Breathe.

We will be alright.

Dementia’s Daughters

Dementia’s Daughters

Meg

This past December, I had a wonderful experience of connection that reminded me that only if we are honest about and open with our vulnerabilities will we truly connect.

A woman living on the other side of the world found my blog and my essays about my mom and emailed me to share a little bit of her own story about being in the middle of raising young children and also caring for a parent who is losing their memory. I remember so vividly the loneliness and confusion of those early years that I was touched by the fact that I could offer some brief respite and solace to another daughter of dementia.

The first years leading up to and after my mom’s diagnosis were some of the worst of this Alzheimer’s journey, even though her disease is so much more advanced now. I assume my mom was lonely and confused, too. She knew she was forgetting some things, though she forgot more than she realized. She was aware that things weren’t always adding up, a fact that still takes my breath away imagining how frightening and painful it must be to lose pieces of yourself, to blip in and out of the world making any sense at all. It’s one thing to be lost in your own world, as she is now; it’s quite another to know that something is happening to your mind, your agency and autonomy slipping like water through cupped fingers, unable to hold onto it or to grab it back.

I am a do’er and a fixer by nature, but I didn’t know what to do or even where to start after my mom was diagnosed. She didn’t really want to – and maybe couldn’t really – deal with it. Between her cognitive loss and an instinct to protect herself, projecting toward this difficult future wasn’t going to happen. Those years manifested in a constant, low-grade ache between my diaphragm and stomach, where all my anxiety lives. Alzheimer’s/dementia is a slow-moving crash course in loss.

No Power + Responsibility = Anxiety

Inspired by the solidarity I felt with this stranger from the other side of the world, I looked back at other emails that lovely readers sent to me after my essays about my mom were published. They reminded me that I write both to make sense of my own lived experience and to discover and highlight the myriad facets our common humanity. Personal narrative, as a genre, is inherently personal. The key is for one’s personal story to resonate with others in some universal truth kind of way. The word essay actually derives from the French verb “essayer” which means “to try:” try to create meaning, try to connect through storytelling.

Over the years I have heard others share their opinion that the memory unit is one of the most depressing places in the world. When I am there, though, I feel like I am among family. The caregivers and staff do the hard and sometimes thankless work of caring for the residents 24/7. Their caregiving allows me to reprise my role as a daughter after years overseeing my mom’s daily care. All of the residents are someone’s loved one, their diagnosis another family’s heartbreak, their decline something all of us have or will experience in some way. Those who visit – old friends, children and grandchildren, nieces and nephews, siblings, and spouses – all hold stories of who their loved one was, what they loved to do, how deeply they are loved. By sharing the joys as well as the suffering of our similar circumstances we create connection and this connection creates meaning. There is easy companionship in knowing that your suffering is understood implicitly, that your grief is shared, and that you and your loved one are seen and are not alone.

The senselessness of dementia demands a quest for meaning. The connection we share and the ability to hold and share my stories with others of dementia’s daughters gives this decade of my life one answer to the existential question “why?” If I can share my story and offer solace to even just one other person, all that my mom and I have learned and lived will not have been for naught.

The Problem of Alzheimer’s by Jason Karlawish is an excellent recent resource about Alzheimer’s.

Partnering: Forge the Deep Connections that Make Great Things Happen by Jean Oelwang is a wonderful book with resources on how connecting and working in partnership with other people (versus in a hyperindividualistic silo) unlocks manifold rewards.

My podcast interview Every Path Has a Puddle or Two has some pretty decent Alzheimer’s and life advice, too, if I don’t say so myself. My momma would be proud. I learned from the best.

This poem from Rosemerry Wahtola Trommer really resonated with me.
On Pause

On Pause

Meg

It’s been a while. It appears that I needed a break.

I’ll be honest: I’ve been stuck. Stuck in ALL. THE. WAYS. Overthinking. Underthinking. Autopilot. Inertia. Consumed by busyness. Servant to my “to do” list. Distracted by news headlines (I rarely sit still long enough to read the whole article). The general volume of inputs is overwhelming, luring me in until I squander my limited down time (one quick check of my phone or email and a wormhole opens up and consumes me – SO. MANY. SHINY. OBJECTS).

Also, my old friend self-doubt has been visiting. Literally the only visitors not disallowed during these social distance months have been the gremlins of my mind – clearly a mistake! I recently learned that self-doubt, apathy (depression), and anxiety (not good enough) are well-known for causing creative slumps, like writer’s block. When those more negative mindsets take over, a whole lot of nothing happens. Call it what you will, I can assure you that a whole lot of nothing has definitely been happening.

Inertia + depression + shiny objects(distractions) + life responsibilities (the true, legit stuff that needs attention) = stuck.

During this fallow period, I haven’t been fighting it (much). Typically I beat myself up for lacking productivity, wonder what is wrong with me, what I have to complain about, what my contribution to the world is. My inner voice is JUDG-Y. Like majorly judgy. And also a bit dramatic and prone to catastrophizing: “You Could Feel Like This FOREVER;” “Woman Retreats to Home in March 2020, Never Emerges;” “Why Does Everyone Else Handle It Better? You Aren’t Even Trying. You Have Made Nothing of Yourself. No One Wants to Hear What You Have to Say Anyway. Indulgent. Worthless.” You get the idea. Super not helpful.

This time, especially during the depression phase, I simply let go. Simply may not be quite the right word for it – listlessly is probably more accurate. I totally lost the plot there for a little bit. I had truly (and mercifully) forgotten how debilitating depression is. But, thanks to COVID Christmas round 2 (is it really just 2?), I now remember. I don’t want to talk about COVID anything so just trust me when I say that that little Omicron-wrapped holiday care package did my head in.

So how did I get unstuck? It was a splash of honoring it and allowing myself to wallow coupled with knowing what it takes to get myself going again (and time). I implemented all the tools in my anxiety/depression toolbox – get outside, get exercise, feel the feels, take time for myself, breathe (often and deeply), try not prognosticate or narrate my very sad story, connect with sympathetic and wise friends, recognize what is and is not in my control, and try to tame that judgy ass inner voice. At first, the sadness still crashed over my head and (briefly) swept me away. If you too were like, “well, crap, here we go again” for most of December, I hear you. I’ve had to work extra hard to put my oxygen mask on these last several months, sometimes successfully, sometimes not.

Fresh air + exercise + deep breathing + being heard + space + time = unstuck

The empowering part of this episode of reality is that, bit by bit, I clawed my way back. Every path has a puddle or two, and I army crawled right on through the mud (after a good wallow).

By the time late January/early February rolled around, I was starting to feel more grounded. I kept finding nuggets of hope and slowly they grew bigger. A friend proposed the notion of a new year filled with “renewal and reanimation of abiding commitments.” She suggested that I write for 30 minutes a day, a goal that seemed entirely doable. Stephen King once said something along the lines of, “if you show up to write every day, when inspiration comes it will know where to find you.” And so I await inspiration’s arrival.

Today is day 11 of my new/old effort to carve out time for myself before the day gets away from me. Every day I set aside 45 minutes with no distractions: 15 minutes of yoga and 30 minutes of writing. The first few writing sessions produced complete garbage – totally aimless, useless nothings. I thought I was probably permanently broken (inner voice still judgy). I also noticed as soon as I sat still for two seconds how much of my time I allow to be buried under busy (and headlines and other distractions).

After a couple of days of yoga and undistracted writing/sitting/pondering, ideas started to form, and then sentences, and then full paragraphs (not Pulitzer-worthy, but also not utter crap). This subtle but real shift in my daily life helped me reclaim headspace. When I feel frenzied and uncertain, caught up in “doing” mode, I approach life more defensively and am more timid and reactive, like an anchorless ship being batted around by the waves. By carving out distraction-free time for myself, I feel more grounded, content, and sharp, which in turn is empowering and leads to more proactive, purpose- and passion-driven choices. Doom scrolling: not an effective use of my time. Connecting with friends, thinking about big issues, walking peacefully in the woods: really inspiring. More than just the acts of stretching and writing, I have been reminded that creativity and inspiration take root when we slow down and allow curiosity and wonder, passion and purpose, to lead the way, even just for 30 minutes.

Words that got me through it:

The Comfort Book by Matt Haig

Wintering: The Power of Rest and Retreat in Difficult Times by Katherine May

Untethered Soul by Michael Singer

Sitting Still Like a Frog by Eline Snel

On Writing by Stephen King

In Our Care and Attention is Our Continuity by Sonnet Coggins

And, let’s be real: I did not magically find more time in the day. There is only a finite amount of time in a day and my life responsibilities haven’t changed. I carve me time out of sleep. Coffee is also a passion, though, so I guess it’s a win-win? Feels like it for now.

One day at a time.

From the New York Times The Morning: Why We Travel

If you’ve made it this far, don’t forget to check out my * Podcasts, Articles, Books, & Websites page for more good stuff!

It’s A Dog’s Life: Lessons From My Dog Part VI (Don’t Look Back)

It’s A Dog’s Life: Lessons From My Dog Part VI (Don’t Look Back)

Meg

Sometimes you just need to get started.

That’s where I find myself these days: broken-brained, busy, and spinning in my tracks. I have all sorts of great ideas peppering my little brain at inconvenient times like halfway through a swim or as I am careening down the highway. As soon as I stop swimming or driving, the flash of brilliance has been overtaken by whatever it is I can’t forget to do or a child with a story to tell or a phone call or text message interrupting my attempt to hold onto my thoughts. Needless to say, I am really, truly brilliant, but you’ll have to just trust me because I can’t remember why.

Ah, life….you prankster.

Today I am stopping the whir for just a minute and compelling myself to slow down, sit in a chair, and show up. To the practice quiet. To calm the frenzied busy-ness in my head. To pause, clear the cobwebs, and set aside the do list. To breathe, long and deep. To finally stop dancing around my laptop as it sits folded closed on my desk and to write no matter how it turns out. To just get started.

Pause. Breathe. Come back to the present.

It can be so hard to stay in the present. We tend to project to the future (planning or looking forward to or setting expectations of what will be) or perseverate backward (replaying past events and conversations, comparing what is with what was (or what we thought it would be)). Both directions can provide useful intel, but dwelling there in the land of should, should have and could have isn’t healthy or productive. This type of thinking tends to be laden with judgy reproach and expectations. Meanwhile, while we are consumed sitting there thinking about it, actual life is passing us on by.

Dogs are masters of living in the moment. Generally speaking, they are known to live in the here and now; they are loyal and honest; they don’t hold grudges; and they love with reckless abandon. Of course, I am chuckling to myself as I write this, because my dog is all of those things except that he has serious FOMO. He looks over his shoulder at what we just passed and I egg him along to join me in the present where, I remind him, walking is a forward motion. He is a miniature reminder and example of what it looks like to live looking over your shoulder and attempting to backtrack: to the dog you just passed but didn’t sniff, or the acorn you wish you had picked up; to live consumed by the narrative of the things you wish you had said, ruminating about how life would be different if only X, projecting forward into the notion that once you get that raise or promotion or title or vacation then you will be happy.

Maybe.

But chasing extraordinary moments in pursuit of happiness is exhausting and often leaves you empty. The extraordinary is this life, right as it is happening now, in tiny little daily moments where you notice. Like when you notice your dog’s imperfections (and your own) and it makes you smile. Not because it’s extraordinary or exceptional – in fact it’s probably the exact opposite – but just because this is it folks. This is all we got.

Don’t get me wrong, there are absolutely forgettable moments. My days are not filled with perpetual delirious happiness, positivity, gratitude and good vibes. Some days I choose to be miffed at the world and some days the world seems to be miffed at me. But often neither lasts too long. I tend to find joy in the mundane, whether by disposition or conscious practice I am not sure. But I know for a fact that there is almost always some miracle of living out there to delight, typically forcing a deep breath and opening up a new perspective.

Dr. Edith Eva Eger, a Holocaust survivor, writes in her profound and moving memoir The Choice: Embrace the Possible, “Many of us experience feeling trapped in our minds. Our thoughts and beliefs determine, and often limit, how we feel, what we do and what we think is possible. I am here to tell you that the worst prison is not the one the Nazis put me in. The worst prison is the one I built for myself.” How can this be, I wonder? She lived through hell, horror and suffering beyond comprehension. She talks about living after with survivor’s guilt and how for a long time she turned her back from her past and (understandably) ran from it.

At some point she realized, though, that no matter how much time she spent beating herself up about the past, about what could have been different if only and why, it would never change.

[I have the choice] “to accept myself as I am: human, imperfect. To be responsible for my own happiness. To forgive my flaws and reclaim my innocence. To finally stop running from the past and do everything possible in my power to redeem it and then let it go. I can make the choice all of us can make. There is a life I can save: it is mine. The one I am living right now, this precious moment.”

Everything is temporary: pain, pleasure; past, future. But, the present, well, you’re always in it.

I’ve asked it before, thanks to poet Mary Oliver, and I’ll ask it again: “What is it you plan to do with your one wild and precious life?”

Go forth, Warriors. Go forth and breathe into the life you’ve got.

For more from Dr. Eger, check out her podcast with Brene Brown on my * Podcasts, Articles, Books, & Websites page.