Tag: Love

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

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.

So Much Still to Teach

So Much Still to Teach

Meg

She would laugh that we were so worried. I can hear her voice in my mind saying, if she understood, “What? About moi? Ridiculous.” She would probably be upset that we even sent her to the hospital in the first place. She is more of a stick-it-out-on-your-own, “I’m not sick, I just don’t feel well,” kind of person.

March 28 to June 5, 2020. That was the duration of my mom’s journey with COVID-19. She went to the hospital with gastrointestinal symptoms. We expected her to get fluids, be monitored for a little while in the emergency room, and then be sent home. Instead they tested her for the then recently arrived COVID-19, which I shrugged off as ER hypervigilance (leave no test un-run!). If only I could be there, I thought, I could explain to them what she can’t, that she always has a little cough and the sniffles. It’s nothing to worry about.

Her positive test result stunned us and resulted in her prompt admission to the hospital, where she tumbled into the black hole of a blossoming public health crisis and a rapidly filling hospital. She used to tell me not to set my expectations too high because then you just invite disappointment. When I heard “COVID positive,” my expectations were grounded pretty firmly in reality. 

She endured 2 separate hospitalizations (I wrote about the first one in a HuffPost essay – ironically, it was published the day she was sent back with secondary complications). She ended up spending 3 weeks total in the hospital. She didn’t eat or walk for weeks; had pneumonia (mild, mercifully) and then a pulmonary embolism and thrush. She was poked and prodded every which way and was generally miserable and confused. We eventually made the decision to discharge her from the hospital on hospice with the goal of getting her to a situation where she was comfortable and surrounded by people who loved her (even if I couldn’t be one of them because, COVID, which is pretty much the answer to any question of this dystopian existence anymore). We hoped that with one-on-one attention in a familiar setting someone could get her to eat. And we were prepared, if not, for her to leave this world in peace and comfort.

It was a long, long road full of Boost protein shakes and brownies for breakfast (for her, and, some days, to be honest, for me, too, because, well, I had to find comfort where I could). It was days of phone calls with doctors and nurses and hospice workers and chaplains and family and funeral homes. It was a nurse praying with her as she lay quietly in her bed, telling her we loved her even though we couldn’t be there. It was short Facetimes with my mom and the aides working with her, the Sound of Music or My Fair Lady playing on her CD player in the background. It was texted images of her sitting in a wheelchair getting her nails done or painting during a group activity. It was videos of her shuffle-dancing around the dining room, supported by an aide, honoring the woman she was and infusing joy where they could into her life. It was reports about her learning how to walk again, first with people supporting her on both sides, then, slowly, a few steps on her own. It took about 6 weeks for the odds of her making it through this illness to shift in her favor. She doesn’t remember any of it, which may have been her saving grace. Because she has Alzheimer’s, she lives in this exact moment, and then this one, and then the next, with no reference to the past or the future.

Through, and despite, it all, she exuded her characteristic grit and indefatigable spirit. She gave my brothers and I fatigued smiles through the Facetime screen, her inner spark sometimes igniting in her eyes through the otherwise wan expression on her face. More recently we have received videos of her humming a tune and dancing down the hall to the beat of her literal own drummer. Her laughter echoes like the first birds of spring after a long winter, issuing robustly and sweetly through the air, quickening the rhythm of my heart and flooding my soul with warmth. I only just realized as I listened more intentionally to her laugh, absorbing more fully this sound that so recently I thought I would never hear again, that her laugh echoes the sound of my own.

I guess it wasn’t her time. I guess she still has more to do here on this Earth, more to teach. I don’t know what else to say about how close we walked to the line, and then how she suddenly walked it back. She would say, “What did you expect? Of course I lived. Maybe don’t take life so seriously. Maybe don’t count me out just because the prognosis looks bad (really bad). Now tell me about you. How are you?”

I find myself speechless at times in her presence, my mind bending as I try to reconcile what happened to her and to our family during those months and the vast loss of life during this COVID outbreak, with her physically sitting there still with me, smiling, laughing, and full of LIFE. We sit outside on the patio at her care home admiring the trees and sky, listening to the river, singing or just sitting quietly. She still appreciates beauty in the world: a clear blue sky, a gentle warm breeze. She will close her eyes and tilt her chin upward, breath deeply, and smile broadly, completely at peace, 100% her authentic, younger self, the mom I remember. Post-COVID, she is back to walking unassisted, dance parties, eating, singing, giving back rubs, smiling, and laughing – lots of laughing. She doesn’t have much to say, and doesn’t understand much of what I tell her, but she knows I am someone special to her. She lights up like it’s a surprise party every time an aide walks her outside and she sees me standing there. On some biological level we are still connected, even if she can’t remember my name. She would like to give me a hug, reaches for me, but we sit and tap our toes together instead, a small physical connection that doesn’t potentially jeopardize either of us. COVID kisses. It’s the best we can do for now.

I recognize that I am one of the lucky ones. My mom returned to me from the brink, and she returned bubbling with happiness and love to share. She still has so much to teach, not only to me, but to all of us: about enjoying the simple things in life, like a warm breeze and a blue sky; about what it means to be fueled by love, to be guided by an inner joie de vivre; about dancing and laughing through life, no  matter what; about resilience and grit and never, ever counting someone out or giving up, no matter the odds; about how deeply the love between a mother and her child runs, and how it’s still recognizable when all else is lost.

When it comes time to say goodbye, whenever that may be, I hope I will be able to be there and to hold her hand. In the meantime, I am counting my blessings and following her lead: taking a deep breath; embracing unbridled joy; seeking daily, small moments of happiness; loving my family and friends hard; smiling and laughing often; feeling grateful for every day I still have mom on this Earth; and living as close as I can to this very moment, and then the next one and then the next, moment to moment to moment. Even now. Especially now.

My mom survived COVID-19 and has lived gracefully with Alzheimer’s for over 7 years. She still exudes love and compassion for others. She still smiles and laughs. She is still the life of the party. She continues to be an example to us all about a life well-lived, no matter what. She would say, “This too shall pass.” And it will. 

Mask up. We got this.

#Youwillbealright

#Wearethesolution

#Wearamask