Category: motherhood

Legacy and Impact

Legacy and Impact

Meg

My mom passed away earlier this month. I realize now that her legacy isn’t just in what she did during her life, it’s in who I am in mine.

As with so much of our Alzheimer’s journey, it was a slow moving end. She was just subtly different one day to the next and I found myself in a strange(r) waiting period for several months. I spent a lot of time sitting with her – sometimes she was awake, but often she slept – and thinking. After all these years, my brain can’t understand that she is gone. I knew she was mortal – though she did have a knack for making me question that – but it’s still a complete mental doozy. Grief in the traditional form of reckoning with her absence from this Earth altogether sits in my peripheral vision. It’s there, but somehow I am not ready for it yet.

There are so many threads to pull on from these last several months that merit further reflection, but the most revelatory at this stage for me is the idea of my mom’s legacy. I have always known how much I loved my mom and how deeply she cared about me and my brothers. Through the lens of her life in review, which somehow only became more accessible when the end was approaching, I see more clearly what she passed on to me. There are obvious things, like my eye color and my curly hair. And then there are the more subtle, nurture things. As I worked to capture who my mom was in her obituary, all the ways she served her community became abundantly clear. I was telling someone just yesterday that one of the first things I did when I got to college was to join the student volunteer center. It struck me then how my mom quietly did her thing and influenced the person I became without me even really noticing it. In other ways she was more overt. I have thought a lot over the years about how freaked out she was when I took a semester off from college. She worried that I wouldn’t go back. All this time I’ve maintained the narrative, “Didn’t she know me at all? I was always going to go back.”

But, now, I see it more clearly. It didn’t have to do, exactly, with knowing me. It was about what she wanted for me. She did everything she could for our entire lives to make sure my brothers and I had a smoother path and better opportunities than she did. She graduated from college when she was 49 years old. I was 16. It could not have been easy with 3 kids, our endless sports schedules, and her school work – and yet she still managed to get us where we needed to be and to put dinner on the table. She wanted me to finish college while I was still young and unencumbered, to just have that college degree in my back pocket.

It makes me think about the parents of the Girl Pioneers at MAIA that I work with in Guatemala. By choosing to educate their daughters, they chart a different path for their families with the hope of improving the future for the next generation. This path is unfamiliar to them and requires real courage, commitment and selflessness. But they want better for their children so they take a chance on this opportunity.

Several years ago MAIA ran a fundraising campaign called Nim Mama, which means “Great Mother” in the Maya Kaqchikel language of this region of Guatemala. The campaign focused on honoring mothers and their collective strength, beauty, and transformative power. The images of the pioneering, brave girls of MAIA with their mothers at their side brought me to tears. They reflected back to me my own mom’s strength and guiding light and reminded me how important my education was to her.

As I go through old photos of me and my mom I think about the legacy of what she gave to me. She stood alongside me, literally or figuratively, my whole life in the same way that the mothers of MAIA stand alongside their pioneering daughters. I realize now that my mom will live on through me – in who I am, in how I tell her story, and by paying it forward like she did so that the next generation has more opportunities and a smoother path still than I did.

I am the same age now that my mom was when she graduated from college. I have two great kids and a loving husband. That college degree that I earned at 22 has opened doors for me. As her primary caregiver for the last decade, our roles reversed for a while as I became more and more responsible for her well-being. I accompanied her to her last day on this Earth to the best of my ability. And I know she is proud of all of these things. It helps me to imagine that she can see it all now and can feel really good about how well she guided my way.

I turn 50 next week. As my way of celebrating my 50 years on this Earth as well as the nearly 50 years I got to spend with my mom, I’m raising funds for MAIA. Paying it forward for the next generation is the best gift I can imagine receiving. Please consider joining me. https://donorbox.org/meg-s-50th-birthday-fundraiser-for-maia-guatemala

Patiently Tending

Patiently Tending

Meg

A friend recently used the term “patiently tending” to describe my caregiving for my mom. Isn’t that the best phrase? It feels almost hopeful, like a gardener sewing seeds all the while knowing that winter will come. It describes so well what it’s like to continue to meet my mom in the strange purgatory between life and death that she occupies.

When I was visiting her recently, I noticed anew a picture that hangs on her wall. It shows my childhood kitchen on Thanksgiving day many years ago. My mom is standing with her mom and her two sisters. Someone long ago glued that picture to a poem about Mothers and Daughters. As I read it, I realized that I was always going to be as ready as I could be for this.

Poem by Nicholas Gordan (according to google)
Me and My Mom, Mother’s Day 2022

Let It Snow – Even in August

Let It Snow – Even in August

Meg

All through the fall, my son poured time and effort into learning a piano piece for his winter recital. He was ready to share his music, but a schedule conflict meant he couldn’t perform. He’d worked so hard on his piece, it was a shame he wouldn’t be able to share it.

“I bet you could play at Grammy’s place if you wanted to perform with an audience,” I suggested.

To my surprise, he was willing to try it. It took a couple of months to facilitate making it happen – volunteer paperwork, CORI forms, scheduling, etc. – but then he was added to the entertainment roster to play on the memory care floor for about a half an hour every-other-Sunday.

As I’ve shared before, my mom, who has Alzheimer’s, has lived on the memory unit of her care home since she started needing 24/7 care seven years ago. Our/her trajectory appears to be an anomaly. She has incredible staying power and a bright spirit that’s impossible to extinguish. But this journey can be emotionally exhausting at times. It can be a struggle to connect with her in any sort of meaningful way. We have lost the back and forth quality of a traditional relationship where each person contributes a part of themselves. Though the metaphysical cords that connect my mom’s heart with mine will never break, as the years with Alzheimer’s have gone by the way we engage with each other on this Earth has an increasingly gossamer-like quality – wispy, ethereal, and easily split and broken.

I often think there’s nothing new to be seen or done with my mom. We’re just here, in a moment, one part biding our time, one part just surviving, and one part seeking the sweet in everything that we still have because we still have something (and what else can we do?). I keep showing up because I promised her I would and she deserves all the love I can give her – plus you never know when the last time will be. Surely when she passes away it will still feel like the time I devoted to her wasn’t enough and I’ll want to go back and be part of every minute I missed. Even knowing that day will come I still cycle through the full spectrum of feelings – many negative – about our situation. Visiting her can be very lonely, that’s just all there is to it.

With that as context, my son and I arrived one Sunday morning in March for his piano performance. He was still wiping the sleep out of his eyes and I was nervous because I am a people-pleaser and I was hoping this wasn’t a bad idea. I know it’s hard to visit my mom and the memory care floor in particular. I know there are unfamiliar – and sometimes unpleasant – smells and that there are people who do and say unexpected things or make strange sounds. There are lots of wheelchairs and walkers and hoyer lifts. I also know that this is not the Grammy who baked cookies with him and watched him play soccer and read bedtime stories to him about a tickle monster and then tickled and tickled him until he couldn’t breathe. I had decided a long time ago not to force my kids to visit their Grammy. They were really happy to be with her in the earlier days of Alzheimer’s and then they weren’t anymore and I understand that. It’s not easy for me, either.

The staff had gathered a small group of residents around the piano with my mom’s wheelchair right next to it. We said hello to Grammy, who was awake to my surprise and happiness, and then stood there awkwardly trying to gauge what to do next. After a couple minutes my son sat down at the piano, I muted the TV, and told him to go ahead. He dove in with the first piece that came to mind from memory – Let It Snow. The staff who were passing by in the hallway and I looked at each other in silent agreement, “Please no more snow.” But the residents? They loved it! Most don’t leave the floor and are not oriented to day or time so, for them, Let It Snow is simply an upbeat song that triggers fond memories buried deep in the mind. No winter fatigue for them. They clapped. They sang. They shimmied in their chairs. They smiled.

He played a few more pieces – from Viva La Vida by Coldplay to Axel F from Beverly Hills Cop. And then he froze. He turned to me and whispered, “I can’t remember how this one I’ve been working on most recently starts.”

“Just start where you can remember, even right in the middle, like when you practice at home. They just like to hear the music. “

And so he started where he could remember. And they were thrilled.

“Wonderful!” “Bravo!” they exclaimed.

My mom? She tapped her toes and her leg up and down to the beat. She raised her hands in the air like a teen at a rock concert. She smiled. She was alert and engaged. She tried to sing or talk. My son’s music manifested a clear response in her. It felt like we three were directly connected, almost in conversation, in a way I hadn’t experienced with my mom in a really long time. I know she has always loved music, but this was a completely unexpected, direct relational back and forth with her. And she was so happy.

As for my son, he discovered that he really likes playing for his Grammy and her neighbors. He goes on a weekly basis now. They are thrilled all over again every single time he comes. Let It Snow begins the recital every week, even in the middle of August. And next week, we will do it all over again in exactly the same way and the reception will be just as warm, engaged, and happy.

And me? Being with my mom as we walk this journey remains the most beautiful, burdensome blessing. I am so grateful for having a chance to discover a new way to connect with her and to feel joy together that I hadn’t yet experienced. Not only did this moment touch me deeply in my soul and fill me with emotions that are difficult to put into words, but the whole recital was an awesome example of people showing up for each other as their best selves – open and joyful, without judgment, making and enjoying music together to the best of their abilities. Every single person in that room contributes to joy and meaningful – even if momentary – connection. This recital time has presented a newness to how I engage with and relate to my mom, a balm for my caregiver fatigue and loneliness, and the kindling of a small, hopeful flame in my heart that has fused part of the fraying threads to my mom back together.

Behind Closed Doors – The Silent Struggle of Caregiving

Behind Closed Doors – The Silent Struggle of Caregiving

Meg

Caregiving is the great, unseen work of a lifetime, whether it’s for aging parents, young children, or a person with a disability. It often goes unnoticed, uncelebrated, and un- or under-paid. It typically requires sacrifice of self in multiple ways, from dialing back career aspirations to a different look to retirement to shouldering physical (adults who are deadweight are heavy and those who are combative make care tough), logistical (ever tried to get someone who doesn’t understand words or can’t sequence directions to sit on a toilet?), and emotional (it may not be personal but some days you can only take being told to go away or shut up so many times) weight. In short, caregiving is a challenge that comes with a side of detriment to one’s emotional and sometimes physical well-being at various stages whether the caregiver is a family member or a paid aide.

Is it because we are taught not to stare when we see someone with a disability that we collectively generally don’t see or acknowledge caregivers? Is it because a lot of care happens behind closed doors so it’s simply not in our view very often (until we experience it ourselves and then suddenly we see these quiet laborers everywhere – driving cautiously on the highway with an older person in the passenger seat, pushing a wheelchair through the supermarket, waiting at the bus stop)? Is life just too busy to occupy ourselves with imagining what it’s like to give everything you have physically and emotionally at work and then go home to care responsibilities there, too, from one’s own kids to one’s own parents? Is it just too hard to face it so we ignore it? That is, until we are in it or need it ourselves?

Bradley Cooper recently produced a new Caregiving documentary that sheds light on this enormous blind spot and need in American society. It highlights different stories about caregiving and caregivers. It tells the story of paid and unpaid caregivers navigating the challenges and joys of this deeply meaningful work. By intertwining intimate personal stories with the untold history of caregiving, the documentary reveals the state and the stakes of caregiving in America today.

So much is broken about the medical system in the US, and caregiving is a separate but related dimension of that brokenness. Everyone needs it or does it at some point and yet there is nothing about long-term care that is straightforward or easy. It’s a big, complicated, expensive system. Reform is plodding – at best. Link here to my prior musings and stats about long-term care – Don’t You (Forget About Me)

Some strategies to make immediate improvements for paid caregivers:

  1. Pay workers a living wage. That should go without saying, but it needs to be said because it is not in any way a given; one cannot show up as one’s best self at work if one is barely able to cover rent and perpetually stressed about making ends meet even while working full-time;
  2. Create pathways for career advancement. Professional development and the ability to grow into better roles at work matter tremendously for worker satisfaction. By giving motivated employees a career ladder for upward opportunity, they will be more willing to stay, thus reducing turnover while increasing the quality of care;
  3. See the hard work these people do and acknowledge them. Like really notice them. Say their names, take an interest in who they are, and thank them for the non-glamorous and often grueling work they do. We’d (hospitals, assisted living facilities, and families) be so screwed without them.
  4. Check out organizations like the National Domestic Workers Alliance who work to highlight these disparities and change the status quo.

Some strategies to make immediate improvements for family caregivers:

  1. Show up. No one should have to take on the burden of caregiving alone. It’s way worse when a caregiver realizes that they haven’t been forgotten, but actually that no one has thought about them at all;
  2. Frequent check-ins: Even if it’s just a short text or phone call, regular check-ins can help the caregiver feel supported and not alone. It’s a small but meaningful gesture that can have a big impact;
  3. Be proactive, not reactive: If you notice the caregiver is struggling, don’t wait for them to ask for help—step in. Take on specific tasks – offer to assist with hands-on tasks like cooking, cleaning, running errands, or handling paperwork. The more you can take off the caregiver’s plate, the better. Often, caregivers won’t reach out for support until they’ve already hit a breaking point;
  4. Acknowledge their sacrifice: Caregivers often go unrecognized for the enormous amount of work they do, so it’s important to make them feel appreciated.

Besides working for policy change that can positively impact the care industry, as with all things: treat every living creature with respect, dignity, love, and curiosity. Everyone has a story to tell. Everyone deserves to be seen and heard. If you are interested, you can add your own caregiving story at Well Beings, an on-going, multi-platform campaign to address critical health needs in America. Lots of resources to learn from there as well.

Take care of yourself. If you are a caregiver, take extra care. Caregiver Syndrome – also known as caregiver burnout – is real. It is “a state of physical, emotional, and mental exhaustion experienced by individuals who provide care for a chronically ill, aging, or disabled person.” Symptoms include: feelings of overwhelm, sadness, anger, irritability, anxiety, depression, guilt, resentment, fatigue, body aches, physical ailments, and neglecting personal needs. Mel Robbins dives into this subject in her podcast Overloaded, Exhausted, and Ready for a Reset: 3 Doctors Give Their Best Advice. It resonated with me completely. I have BEEN THERE. You know what one of the doctors recommends at the end? Putting your own oxygen mask on first. Huh, I wonder where I heard that before?

Take a deep breath and maybe a couple minutes of quiet for yourself.

Photo by Artem Podrez on Pexels.com


What Are We Without Our Memories? – Reflections Six Years On

What Are We Without Our Memories? – Reflections Six Years On

Meg

This post follows up on a piece I wrote in November 2019. I asked in that post: what is life without a memory? I didn’t have any good answers at the time. And I still don’t, not really. But I spend a lot of time wondering about this. In fact, I woke up in the middle of the night the other night wrestling with this question. My middle-of-the-night-brain thought I should write about it only to discover when I woke up that I already had. Six years ago. Which just confirms that everything old is new again in my brain.

The big questions I have are what – and who – are we if we don’t have a memory? I also wonder what goes on inside my mom’s head – what is she seeing when she points to things that aren’t there, what is she trying to describe when she can’t find words, is more of her there than I realize, should I be more patient and move more slowly when trying to engage her, what does it feel like to entrust oneself and one’s well-being completely to another person, what is she holding on to this version of life for?

The mom I have now isn’t the mom who raised me, except in glimpses of a smile or a laugh or a familiar look (she was – and remains – a superior eye roller). She has no agency – she has no decision-making or verbal capacity, is completely wheelchair bound, and requires a mechanical lift to transfer her from chair to bed. She is quite literally a body without the instructions that typically come from a mind. But this body of my mom’s and the essence of who she was and who she remains to me are still here on this Earth, a living, breathing human being who exists, who needs food and care and love even though it’s hard to tell what impact any of it has on her. Ah, except for music. If she is awake, she still responds very clearly and enthusiastically to music by tapping her fingers or bouncing her foot.

Prior to my 2019 post, I had read Dr. Atul Gawande’s book Being Mortal: Medicine and What Matters in the End. I was inspired and grateful for the new perspective he presented, appreciative of his recommendations for aging and for dying well, and encouraged to see the emphasis on quality over quantity when it comes to facing terminal illness and one’s mortality. I found myself wondering, though, how one can have a meaningful, purpose-filled life and live life to the fullest until the very end, which are the premises of Gawande’s book, if one has no agency and can’t remember anything. It’s one thing to live in the moment, moment to moment. That’s enlightenment, or approaching it. But isn’t life, ultimately, a collection of memories? The best parts of life are the living of it and then the reliving of our favorite memories through pictures and sharing stories, anecdotes, and things learned along the way. When someone dies we bask in the memories of our times with that person. So many of my conversations start with, “Remember when?” What happens when you don’t? Who are we without our past? Without memories, what does it mean to be alive?

Since 2019, I have tried to connect with Dr. Gawande a couple times to see how he would answer those questions or what he would recommend. I have not had any luck finding a good email address for him so what I have sent has gotten bounced back. Rather than waste more time trying to find his email address, I instead tried to answer my questions on my own by digging around on the web to see what he has said on the subject. The answer isn’t super straightforward – with cognitive issues it seldom is – but it leans on the importance of dignity, joy, and connection, even if they only occur in one moment and then the next moment and then the next.

Gawande challenges the idea that memory alone defines us. Though he doesn’t minimize the loss of being alive without a memory, he invites us to expand our definition of “being alive”:

  • It’s not just what we remember, but how we feel, how we’re treated, and how connected we are.
  • Meaning can be found not just in grand narratives but in small, sensory moments.
  • Even as memory fades, the present self still experiences emotions, relationships, and little pleasures—all of which sustain identity and meaning.

Gawande’s core insight is that:

Memory loss may chip away at the narrative of self, but not the essence of life.

Even without remembering yesterday, living today—with dignity, comfort, connection, and choice—can still be deeply meaningful. The best we can do is to provide as much autonomy, purpose, joy, dignity, and connection as possible. The emphasis becomes the small moments and an identity rooted in feeling versus memory.

It’s surely not the life my mom would have wanted, but by reframing my expectations in this way at least I know that my mom has all of the elements of a quality life.

Considering. I am not so enlightened and rose-colored-glasses that I completely accept this reframe. It definitely feels like a consolation prize, though I do appreciate the perspective shift and the reassurance that what little moments of joy and love and music my mom experiences throughout her days matter.

As to wondering what is actually going on inside her mind, well, that’s actually a WAY more interesting subject I plan to delve into further. A friend recently recommended the Telepathy Tapes podcast, which “explores the potential telepathic abilities of nonspeaking individuals with autism.” That is cool in and of itself. What does this have to do with my particular plight? Well, there’s an episode on telepathic communication with Alzheimer’s patients as well. Woo woo? Perhaps. Worth trying? Abso-freaking-lutely. Imagine what I could learn from sitting quietly a bit more, breathing deeply, and listening. Maybe I’ll hear my mom’s voice and gain deeper insight in our journey together. If nothing else, it’s good practice for putting my own oxygen mask on and finding my peace, quiet, and stillness.

My mom was – and remains – a beautiful and incredible human.

A 10 Second Oxygen Mask Moment

A 10 Second Oxygen Mask Moment

Meg

This was just too good and fitting not to share. Deep breath. We got this.

Choose to Lean In – to LIFE

Choose to Lean In – to LIFE

Meg

I was listening to Anderson Cooper’s All There Is podcast the other day, specifically the episode Love is What Survives. People called in to share their stories of grief, and one phrase kept coming up again and again: “lean in.” It resonated in my mind because it connected with a funny experience I had had that weekend.

I had spent the weekend in Toronto with four friends. On one evening we were all jammed like sardines in a small SUV, one in front, three in the middle row, my friend’s husband driving us out of the city after a long day out. There were multiple conversations happening simultaneously among us all, a buzz of noise and commentary and general conversation. At one point, the friend sitting up front got her phone out and told us to lean in. Two of us did, looking up and smiling for the camera. Our other friend was either in the middle of another conversation or misheard and called out forcefully, “No!” It was so completely out of context and character that we all broke into instantaneous fits of belly laughs. We laughed so hard we couldn’t speak, until someone wheezed out another “no!” through giggles and laughter would erupt through the car all over again. The rest of the weekend was peppered with a call and response of “lean in!”, “no!”, punctuated with more laughter. We even have a keepsake picture memorializing the moment with three of us gumming it up for the camera and only the left eye and shoulder of our fourth friend in the frame.

I was reflecting on that lean in moment and the weekend full of friendship, rejuvenation, and laughter as I kept hearing the phrase “lean in” while running my errands. And I started to think – that really is the key, isn’t it, to this life? You have to lean into it – to friendship, to love, to taking chances sometimes (like when I got on that plane and flew to Guatemala, which is what started me on this blogging and writing journey and reignited a part of me – through connection and purpose – that had been dormant). You have to lean in to LIFE – to ALL OF IT. Even the hard stuff.

It’s natural to want to protect oneself from difficult feelings, to have the curated instagram version of an emotional life where everything is beautiful and awesome and happy all the time. It can feel better to be numb or to press down hard feelings in the hopes that they will stay quiet or go away. It’s counter-intuitive to face into – to lean into – pain and grief, but that’s actually the recipe for healing. It’s also the recipe for genuine, authentic living.

Photo by Kampus Production on Pexels.com

It took me a long time to learn that, unfortunately, the feelings don’t go away just because you avoid them. In fact, ignored feelings often strengthen and distort, like a crack in the foundation that settles in more deeply as time passes, eventually shifting the structure enough that the walls start to lean. In my early days of grieving my mom’s health and my health while trying to juggle kids and work, I would use the analogy that the wheels were coming off. Maybe a more apt analogy was that I had built a house out of a deck of cards and was spending all my time running around trying to keep the wolf from blowing my extremely precarious structure over versus strengthening it from within.

I can’t help but continue to reflect on the wonderful, cleansing laugh of my recent lean in moment. The whole weekend was a beautiful example of leaning in – of showing up, making memories, standing by your people in good times and bad – and also just because. That’s really the essence of life. We are here so fleetingly in the grand scheme of things. When a group of friends comes together in a circle they lean in while while leaning on each other. It’s a hug that is simultaneously the support we need to hold each other up. So lean in – to it all! That’s what sustains you!

Memories and Mommas

Memories and Mommas

Meg

It’s been a (very, very, very) long time since I’ve sat down to write.

I used to take the wee hours of the morning for my writing time, rising before anyone else in the house was awake to get my thoughts down. Revisions can happen later, but inspiration and the time to get it down only seems to happen for me before the day takes off on it’s own. Now that I recognize how important defragging the ole motherboard (aka the brain) is, I prioritize sleep. And there is only so much time in a day. Plus maybe I have been having trouble making myself sit down to write alongside a dose of writer’s block and a springling of hopelessness for the world. Deep sigh.

BUT, I’ve updated the site’s Dementia and Caregiving Resources so I wanted to say check those out.

And, while I’m here, and because it’s Mother’s Day (in the U.S. anyway) and because I think about Alzheimer’s all the time when it comes to my mom, I’ll reflect a little on the love and loss that this day embodies for me (and, I presume, many of us in one way or another with mom’s gone too soon, mom’s lost to dementia, mom’s that were never the mom you hoped for…it’s complicated).

My mom was one of the greats. I am so lucky for that, surely even more than I realize. I continue to unearth the treasures of my past that she saved on my behalf. She was family first 100% and she showed up and cheered for her people reliably, consistently, always.

And also, it wasn’t perfect. She got on my nerves something fierce sometimes. We did not operate the same way – at all. There is no to do list that stands a chance against me. My mom would begrudgingly make a list and then lose it somewhere between home and the grocery store.

I think about all the ways I could have done better by her. I’d start by wiping the scowl off my face in her college graduation photos. I was in 11th grade and I couldn’t understand – not even close – what it took to finish college on the cusp of 50 with 3 kids and a household to run. I also think of her every time I unload the dishwasher. I wish I could tell her I am sorry for all the times I took a clean bowl out of the dishwasher and left the rest, as though I didn’t know who that chore would fall to. I could have done better. And also I was a kid and I own my selfishness and recognize that one of the blessings of a mom like mine is that she loved me even when I was at my worst. What I lost is the opportunity to tell her, “I got mine, mom. Ha ha! Karma is a bitch.” And then she’d smile and we’d laugh. Clearly from the birthday card pictured she only dwelled on the best in me – and we did have part of my adult life to enjoy each other’s company and make up for my teenage transgressions. We traveled around Europe together for two weeks when I was in my mid-20s and she told me she had to pinch herself that I wanted to spend so much time with “your dear old mom.” It was a gift, in both senses of the word. Sometimes I let myself dawdle at the precipice of imaginings about what the last 14 years could have been like for me and my kids, but that generally leads to a vice tightening sensation around my heart and lungs so I tamp it down. When did that kind of thinking ever lead anywhere good?

Oh, my mom is still here. But she’s so far gone. She deserves better than the indignities Alzheimer’s has thrown at her, slowly robbing her of her memories and her agency and everything that made her her.

I’ll be precise. Not exactly everything. She does still smile and sometimes she laughs, too. She still taps her toes to music and raises her arms in the air as though she is conducting an orchestra. She is still loving and wants to be loved. Those things are all authentically her. In fact, perhaps the most remarkable thing about my mom is that her Alzheimer’s journey has been the epitome of grace. Somehow, despite having aphasia and being on the severe side of the cognitive impairment scale when we moved her into memory care, she has managed to create connection and to build relationships. The caregivers and nurses at her facility truly love her. It’s remarkable that she has been able to affect people in this way, to somehow remain her outgoing, loving self and make a bond with others, despite everything.

And by everything, wew, let me tell you, it’s a lot. My mom is dying a slow death by a thousand cuts and indignities. As am I, emotionally. She’d be so pissed if she was of sound mind and she walked in to see herself now. I know this and there’s nothing I can do about it. I just keep showing up and showing her love no matter what, like she always did for me. I hold her hand, I clip her nails, I feed her pudding and chocolate chip cookies. And there’s real and unexpected joy in these little moments, seeing her take pleasure in those things (specifically the pudding and cookies). It’s very clear that she enjoys these treats – her eyes soften and glimmer, she chews with her mouth closed, slowly, savoring the moment. She is happy and able to experience joy. I try to find peace in this reality.

I have grieved aspects of my mom in multitude different ways over the last 14 years since concerns about her memory were first raised. It’s astonishing that you can grieve and plateau and then something new happens and you grieve again, but differently. And yet this grief has no closure. I’ve been told that there is more grief to come when she actually departs from this world. It’s a pretty stunning thing to grieve someone for 14 years and not even have started yet. Sure, I’ve adapted over time to wherever she is in each stage of this disease. I’ve learned to make conversation with myself and nod and smile to her nonsensical words since she has been nonverbal for so long. I try not to notice the crumbs scattered all over her shirt and lap, or that she’s not wearing her own clothes the majority of the time. Sometimes my inner narrator gets angry, as though her tenacious hold on life is some sort of punishment of me. But I know rationally that she would never want this for herself, let alone for me. Her body and a version of her spirit just keep going for some mysterious reason, and I keep trying to find new ways to sustain my reserves, to adapt, to love her, to live in the moment, to focus on the simple things, and to keep going, too. Just like my mom taught me, and teaches me still.

Utterly Imperfect

Utterly Imperfect

Meg

I think the pandemic might have broken me.

I have been spending way too much time doom scrolling – the daily COVID case counts barely register anymore amidst all the horrible there is out there to discover. That’s fixable, at least, once it’s been identified. It’s common enough knowledge that human brains are wired with a negativity bias. We just lap that negativity up and tend to remember the negative over the positive. It’s a psychological thing. Google it if you don’t believe me. You can podcast it in many forms as well (click here for one!).

Needless to say, being hardwired toward negativity plus endless access to truly grim news means that essentially every time I open my laptop to write a new blog post I end up “just one more click”-ing myself into oblivion and never actually accomplishing a darn thing. And then it’s time to make breakfast (or sometimes lunch) and then my me time is O.V.E.R.

But I’m back! TODAY is the day! I figured out I was in this unfortunate cycle and am righting the ship and re-prioritizing my time. I have put an end to the doom scrolling and re-committed to putting the screens away earlier in the evening to preserve time before sleep to read an actual, held-in-my-hands book. Lo and behold, it works! Here I am writing again and getting back to what counts. I just updated my blog Resources pages and added a Happy Healthy Kids page. Hello world!

Don’t get me wrong, summer is also just wrapping up so I was a little pre-occupied with squeezing the freaking marrow out of this LIFE. Except it also rained a lot (wettest July on record – lucky us!) or was otherwise 95 degrees with 85% humid and truly, honestly, totally disgusting outside much of time. I may have started to mold, but then again I also didn’t need to water my plants much so there’s that.

It’s not what you look at that matters. It’s what you see.

Henry david thoreau

One thing I discovered over these last several months is that I seem to have left the feeling parts of my brain somewhere back in the spring of 2020 and now live in this strange numb-ish state – like I am sitting on the shore observing from a distance as my active self/life floats by down the river. It appears that the pandemic and all the endless foreboding desensitized me in some way so that what was once a heightened sense of grief or anxiety is now toned down a little. My scientific evidence?: I did a high ropes course with my kids this summer that we had done a couple pre-pandemic summers ago as well. I used to be downright shaking and sweaty-palm scared. I had planned not to participate this time, in fact, knowing how much I hated how it made me feel last time. But that seemed like a lame example coming from a mom who’s always saying things like, “we have to face our fears!”, “lean into the uncomfortable!”, “you only need to be brave for 10 seconds.” So I harnessed up and off we went to the treetops. Same circumstances, same heights, same equipment, same course, same me. Except that I was totally calm. I didn’t dread the bounce in the middle of the tight rope walk. I threw myself off the platform on the zip lines. I just kept moving forward. Sure, I was roped in and checked my gear appropriately, but I wasn’t stuck thinking on the platform. My brain is simply not as reactionary as it was before the pandemic. So that’s good.

However, it’s quite possible that this past summer I also didn’t have the correct date to pick my child up from sleepaway camp. And perhaps I planned a short getaway for my husband and I while the kids were away? To my credit (but really thanks to a friend’s super helpful intel a week before camp started), I figured out that said sleepaway camp was only 3 nights, not the 5 I had planned for in my head. Which meant that if I was in Rhode Island on my child’s third day of camp I would also not be in New Hampshire on what was not only the third but also the last day of camp (hypothetically speaking, of course). That was problematic. Did I mention it’s been a strange time?

Never fear, it ALL worked out. Everyone was retrieved at the right time and in the right place. But, seriously? Never in my prior life would I have imagined coming close to doing such a thing. I pride myself on my organization skills. DAMN. In my defense, I mean, the plans we had for like a year prior never really happened so I just kind of stopped paying too much attention to dates. I didn’t honestly believe the kids would actually GO to camp, so why worry about when they would come home?

Needless to say, I seem to have let go a little, both of control and of schedule (and perhaps orientation to time – maybe that one I want to get back). This pandemic period has taught me all about being imperfect. It’s an honest state of being human. Do your best, always strive to do well by yourself and others, but being perfect is so overrated (that’s the title of my forthcoming, yet-to-be-written book since I am, after all, an imperfection expert). It’s not such a bad thing (I mean, assuming all children are returned to their rightful homes safely and in a timely fashion, of course). Embrace it. Own it. Help others out. Tone down the judgey. We are ALL human, we are all imperfect.

Take a deep breath. We are on this planet, in this life, together.

Update: This Adam Grant article and podcast sheds some light on all the pandemicky feels:

“Adam wrote a viral article for The New York Times on a feeling many of us are struggling with right now. It’s somewhere between burnout and depression: languishing. This neglected middle child of mental health can dull your motivation and focus—and it may be the dominant emotion of 2021. This article originally appeared in The New York Times on April 19, 2021, with the headline, ‘There’s a Name for the Blah You’re Feeling: It’s Called Languishing’. ” Check out the podcast here and other good ones like it here!

Within the One Hundred Year Flood

Within the One Hundred Year Flood

Meg

I kept a chronicle of what we did over the past year so that I don’t forget what it was like to live through essentially a 100 year flood (please tell me that this won’t happen again for another 100 years).

As soon as normal hits, it’s easy to forget the details of what is now mercifully becoming the past. March, April and May 2020 were some of the longest months known to man. And yet somehow the last year is already a bizarre blur. It doesn’t feel like it should be blurry because we were all focused on the most minute little things to keep from going completely insane, but somehow it all just blurred together. Meanwhile, March, April and May 2021 have rocketed on by. I am left gasping for air as I watch time wink and salute as another year of my life speeds off down the highway.

Remember washing groceries and I don’t mean just the fruit and veg? Being afraid of the mail and packages because we just didn’t know? Cooking ALL THREE meals EVERY. SINGLE. (DAMN). DAY with no merciful end in sight? I tried to embrace it, but I could barely deal.

Here are a few highlights (lowlights?):

Day 20 – March 31, 2020 – So here’s a remarkable thing about this social distancing…it’s ridiculously busy in such a weird way. I missed 16 whole days of writing this journal. How is that even possible? Well, I’ll tell you how it’s possible! Because life right now is this twilight zone of surreality. I have been teleported to the 1950s and spend most of my waking hours cooking, cleaning, doing laundry, working with kids on one thing or another, and curating precious items for our consumption or comfort (groceries and paper towels in particular).

It’s funny already to look back at the first three days. Maybe those were the hardest. No, probably not. I think the first two weeks were just a rollercoaster of emotions and moments. Suddenly everything on our calendars was being canceled. It’s both an eerie feeling and also really freeing to just go through your calendar and cross everything off – hockey games, swim practices, play dates…some of that stuff was just filler, but some things, things we had planned for a long time or were really looking forward to, are harder to let go of.

I am looking at my calendar now to jog my memory and am laughing that I literally whited out or deleted anything that had been on there. It’s like when I lived in Madagascar and they would just change the departure time of a flight by erasing it on the chalkboard! Ha! The plans you didn’t do don’t exist, I guess. Which is true enough.

That first week, March 16-22 (because I fast discovered that weekends when you have no plans or anywhere to go are just like any other day), we adhered pretty closely to the routine I set up. It seemed to help the kids structure their time and energy. When I call it “homeschool” I should be clear that it’s more an insanity prevention routine than any actual attempt to advance academics. The days are sooooo long with nothing to look forward to and “nothing to do.” I find you have to beat that emotion of “there’s nothing to do” to the punch by sticking to some semblance of a routine.

Day 49, April 28, 2020 – A month ago today, mom started showing COVID symptoms. March 28. She has been sick for a whole MONTH. That’s daunting. It’s been a long month. For both of us.

Seems the neighbors across the street already sold their house. Even in a pandemic, I guess real estate around here is HOT.

Day 50, April 29 – DAY 50! WOAH. That gives me pause.

Day 63, May 12 – Some food prep of note – whoopie pies, auntie anne’s pretzels, and ice cream. ALL HOMEMADE. Mom’s birthday. And also TWO FULLS MONTHS since quarantine started. Incredible that she is alive – and WELL (it seems) – to celebrate it. Amazing to see her on Mother’s Day in a drive by car parade. I didn’t think I would likely ever see her alive again when she was so sick. It was amazing to see her, even through a windshield.

Wednesday, May 13, 2020 Spring Observations (To keep my spirits up and focus my attention away from the gnawing anxiety and grief within me, last spring I meticulously observed the changes to my front garden. Usually I don’t sit still long enough for more than a passing glance, but last year I tried to take advantage of the quiet (which, incidentally, in some respects, I miss).

It’s been an allergy storm this week! I guess the pollen is out.

At the same time, we have had 3 or 4 nights with freeze warnings. That’s really late in the season. We even had snow on Saturday! What?!?! May 9.

Despite the cold, everything continues to grow. My peonies are practically growing visibly every day. Same with the bleeding heart. The cherry blossoms have held on during all the cold and wind. They are probably about peak now and the blossoms will start to fall off. The front garden bed is still just green but much more full and lush. I added some phlox and lantana a week (or two?) ago and have a “small shade garden” to plant today. Spring is here!

Day 72, May 21 – I was thinking today how this is supposed to be such a busy time of year and usually we are crawling to the finish with millions of things to do and end of year recitals and celebrations, just wanting it all to be done finally. It starts to get warm and we all get spring fever. And then the buildings start to get overwhelmingly hot and the walk to school gets hot and seeing all the same people over and over gets old and then it’s finally summer break.

This year of course none of that is happening. And it’s sad. Well, part of me is sad about it anyway. This weekend is Memorial Day weekend, traditionally the kick off to summer, but it’s no different from any other day or weekend this year…well, that’s not quite true. The warm weather definitely helps and changes the pace of the day and the frame of mind. The kids are most recently keeping busy with remote control cars. We are getting some water guns and have a stockpile of water balloons for backyard summer fun. We continue to wipe down anything that comes into the house with masks and gloves on and rubbing alcohol. Slowly people are starting to get out more with masks on and keeping their distance. Those are the new guidelines as of May 18 when the state started to loosen restrictions a little bit. I immediately was flooded with emails and phone calls to reschedule dentist and doctors appointments. Not there yet. We shall see!

Day 79, May 28 – First “play date” in months walking and rollerblading with friends. Amazing!

I have about 80 miles left to drive on my current tank of gas, which I last filled on March 9!!!!

Day 80, May 29 – Made chocolate ice cream today – YUM!

$1.93 per gallon of gas right now at the gas station nearest to us.

May 9, 2021 – Mother’s Day 2021 – I got to actually be with my mom, not over facetime, not from 6 feet away, not through a car window. So many times over this past year I thought this would never happen, that I would not be able to be with her while she was still alive again. Yet here we are.

Gas is about $2.89 per gallon for the regular stuff. Always fun to track commodity prices over time. And, yes, my garden is growing again and I am delighting in all the things I (apparently) planted last year that I forgot about in the intervening months! Life springs forth anew!

May 25, 2021 – George Floyd. RIP. Has it really only been one year?

A friend read this poem to me when my mom was hospitalized for her second stint with COVID complications:

The Promised Garden

There is a garden where our hearts converse,
At ease beside clear water, dreaming
A whole and perfect future for yourself,
Myself, our children and our friends.

And if we must rise and leave,
Put on identity and fight,
Each day more desperate than the last
And further from our future, that
Is no more than love and respect shown
To all blocked from the garden that we own.

There is a garden at the heart of things,
Our oldest memory guards it with her strong will.
Those who by love and work attain there
Bathe in her living waters, lift up their hearts and
Turn again to share the steep privations of the hill;
They walk in the market but their feet are still.

There is a garden where our hearts converse,
At ease beside clear water, dreaming
A whole and perfect future for yourself,
Myself, our children and our friends.

~Theo Dorgan

To be continued…