Category: Grief and Loss

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

A Portrait of Alzheimer’s – And Love

A Portrait of Alzheimer’s – And Love

Meg

The truth is, maybe I couldn’t have lost my mom any other way.

What if I was still used to our daily phone calls, habituated to her answering my call or email within hours if not minutes, used to the certainty that she would listen to whatever I had to say – a quandary, a train of consciousness, the latest good or bad news – without judgment? If that had just stopped all at once, maybe I wouldn’t have survived it.

At first Alzheimer’s presented itself in repeated dialogue, repeated questions, consternation when a waitress brought the meal she ordered but not the one that fifteen to twenty minutes later she was expecting. In those days, the synapses just seemed to not quite be firing on all cylinders. Those who loved her knew something wasn’t quite right, but we weren’t exactly sure where the line between getting older and a significant problem lay. My mom had incredible social graces coupled with fierce pride so she could get away with a lot and the rest she clearly didn’t want to talk about so we trundled along like that for a couple of years.

Over time, the phone calls and emails became less frequent, more repetitive, and more confused. Often when I asked what she had been up to it was clear she was making stuff up that sounded like things she could plausibly be spending her time doing. Eventually we just talked about the weather. Out at dinner she’d look at the menu and then say, “I’ll have what she’s having.”

And then, after a couple more years, the phone calls, unless facilitated by an aide, stopped altogether. Sometimes she would hold her TV remote to her head when the phone rang, annoyed she couldn’t get it to work. But by then I had weaned myself off of our regular conversations. They had become so stilted anyway that it didn’t hurt so much. I was mainly consumed by that point in figuring out what needed to be done to facilitate her life and her safety.

At this stage, she couldn’t follow directions when she was driving somewhere new, couldn’t help my kids navigate the treasure hunt map at a children’s event to figure out where the gold doubloons were buried in the sandbox. She would show up at events that weren’t scheduled and miss ones that were. I can’t remember the number of ATM cards that had to be replaced. Executive functioning skills pretty much altogether went out the window – though she did somehow manage to sign up for an online dating site and execute on organizing a date at the local coffee shop. SO many times during this journey I have wondered, “how is THAT the thing you remember?”

It went on like this. Ironically, I look back and see how much was still left of my mom then. I knew enough to know that the Alzheimer’s diagnosis was a shot across the bow that forced me pay attention to every minute I had with her in a way I may have taken for granted if I didn’t know she had a degenerative, terminal disease. I mean, we are all going to die, right? But that doesn’t mean we pay attention when we are busy living our own lives. That’s natural. I try to look on the bright side that this gutting diagnosis made me go back home to spend time with my mom more often than I might have otherwise during that stage of my life.

I still cry sometimes for what I have lost over the years, all the what-could-have-been’s. Alzheimer’s continues to find new and creative ways to take a piece of my mom away and reignite my grief. This slow, trickling loss is death by a thousand cuts. As a friend’s mom used to say, “It’s not easy getting into this world and it’s not easy getting out of it either.”

I started this post thinking I would show one picture from every year my mom has lived with Alzheimer’s to display how it impacts a life, slowly but surely, over time. I started collecting photos – and it’s breathtaking how I hardly noticed the shifts as they were happening but now I can barely remember when she used to be able to speak. I realized, though, that my mom would want to be remembered for the independent, life-of-the-party, no bull, devoted mother, sister, aunt, friend, and wife that she was. The last 13 to 14 years are a chapter – a long one with lots of ups and downs, granted – during which she has exuded her characteristic grace and loving spirit but has also been more vulnerable and had less agency than her prior 68 to 70 years. Since I’ve written so much about her I thought I’d share some pictures that capture her the way I think she’d like to be remembered.

She’s still here, but she’s slipping away (in her typical fashion – on her own time, doing it to the tune of Frank Sinatra’s “My Way” till the very end). We have done the best we could with the cards we were dealt, and she also deserved to get so much more out of these years than this disease allowed.

I’ve had a lot of years to figure out my role in this journey and have worked hard not to lose myself in it. There’s a good reason that I started a blog called “Put Your Own Oxygen Mask on First.” I learned first what happens when you don’t, and then spent the rest of these caregiving years trying to take care of myself, too. I am applying those lessons as my watch over my mom comes to an end. For me, that means carving out time to be with my family and friends. It means getting regular exercise and not compromising on that 1/2 hour or hour of me time. It also means trying to eat well. Or just eat. When things get really busy and/or I am really sad, I tend to skip meals. That starts a cascading effect of low blood sugar, which manifests as fatigue and irritability, and then triggers cortisol and adrenaline bursts that cause increased anxiety (all of which can reignite my Rheumatoid Arthritis). In the early days after my mom was diagnosed I was downright skinny. But not healthy. This type of rollercoaster isn’t good for my body or mind and it certainly doesn’t put me in a good position to advocate for my mom or my kids. Always put your own oxygen mask on first before assisting another passenger on this journey of life!

As I begin a more reflective stage in my caregiving journey, I put together a list of logistical priorities that, in my experience, become important fast when confronted with the overwhelm of what it means to care for someone with an Alzheimer’s diagnosis. Check it out in my Dementia and Caregiving Resources. And, please, if you have the means, support Alzheimer’s research (I personally like Cure Alzheimer’s Fund, but, mercifully, there are others and work is being done constantly to try to figure this out).

Like I said, she is still here, but I know I’ll love and miss this woman for all my days. I already do.

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

What I’ve Learned

What I’ve Learned

Meg

This is a perfect Oxygen Mask Moment that sums up well much of what my recent reflections around caregiving have taught me. Thanks, Maya Angelou.

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.

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.

Is Being Stuck the Same as Finding Stillness?

Is Being Stuck the Same as Finding Stillness?

Meg

The theme of my first poetry/writing class was Stillness. Finding stillness seems like a good idea in this whirlwind world. I often think it would do me some good to find a little stillness in my busy mind and can’t-sit-still body. I get the idea. But I went to a dark place with it, and all I could think about was being stuck. I had to ask, after reflecting on it for a couple hours, if being stuck was the same as finding stillness?

These last months I have been living ever more into the bittersweet of life, the tide carrying me along in a daze. My kids are growing – literally inches before my very eyes some days. And my mom keeps on beating the odds and crushing life. Except, in her case, I ask myself more and more often – why? She isn’t living the life she would have wanted. She wouldn’t recognize much about herself currently, though her loving heart, joyous spirit, and beautiful laugh remain in tact. I tell people all the time that since Alzheimer’s started affecting her she remembers what’s in her heart way more than what’s in her head. I’ve felt that to be true, and didn’t realize that Tennessee Williams is quoted as having said,

“Memory takes a lot of poetic license, for memory is seated predominantly in the heart.” – Tennessee Williams

It’s neat to think about memory living in the heart for someone who is severely cognitively impaired and doesn’t have a memory in the traditional way we think about it. It’s a gift that my mom has such a loving disposition because she doesn’t say much, certainly not much that makes sense. A lot of the time she has this far off look and I have to work to get her to focus on my face. So it’s not the most interactive relationship, and yet, she still exudes love, which is gratifying and heartwarming.

I wonder sometimes if her stillness in time is stuckness. The world keeps on whirring on by her and she remains essentially the sane and completely oblivious to it. I know I certainly feel stuck right smack dab in the middle of the sandwich even as the world keeps whooshing right on by. I heard someone on a podcast recently say that a sandwich is too generous a term, referring instead to this stage of life as more of a panini. Call it what lunch item you will, I’ve been in this for a very long time and this past summer I officially hit the summer of my discontent. Shakespeare may write about winters of discontent. I can tell you, no iambic pentameter involved, that this rainy ass summer stuck between kids launching and mom lingering, was discontenting. Probably not for the first time. Nor the last.

I’ve been caring for my mom for 10 years. TEN. During that time my kids went from babies to toddlers to teens. They are growing, launching, evolving. My role in her care, what it requires of me, and how I navigate it, have all changed and evolved during this time as well. And, sure, my mom has changed, too, but not in any good ways. She’s still alive, and she still gives love, but she also has no agency and isn’t part of her kids’ or grandkids’ lives. She is physically here and simultaneously absent. She’s the most present absent person I’ve ever met. She has missed it ALL even though she is literally, physically, right down the road. These last months I’ve just been stuck on the tragedy of that and the purgatory of this responsibility as well as my grief.

It’s the dawn of the summer of 2025, and I am just getting around to editing and posting this piece that I drafted in 2023. That tells you without any words required what life is like stuck in the sandwich! I recently read Mothers and Other Fictional Characters in which the author, Nicole Graev Lipson, shares the Portuguese word “saudade,” which translates roughly to “the presence of an absence, the ache that replaces what’s gone.” That’s such a perfect way of describing grief (I called it The Void in a previous post). It’s feeling the presence of the people we have loved who have departed this Earth fully. In my mom’s case, I actually live with the absence of who she was every day. Saudade.

Saudade – the presence of an absence, the ache that replaces what’s gone – page 20, Mothers and Other Fictional Characters by Nicole Graev Lipson

Anderson Cooper’s All There Is podcast talks a lot about grief, too much for me, to be honest, because I get it and I typically look to podcasts for an escape. But the title of the most recent one, Love is What Survives, struck me because that just makes sense. The pain we feel in loss is love with nowhere to go. I am grateful for having been so loved. And that helps move me forward and feels the slightest bit like the stuckness, for now, is melting.

“The most painful state of being is remembering the future, especially the one we will never have.” –  Søren Kierkegaard

Ah, and if you made it this far, to answer my own question, no, I still cannot sit still so apparently being still and being stuck are not the same. In fact, sitting still would allow me to write more blog posts. Being stuck prevents me from doing so. Somehow being stuck gets in the way of the emotional and physical stillness of the mind required to create. Or that’s what I think anyway. Since I seem to be finding room to write again, it seems whatever blocked me mentally for the past two years has shifted. For now! Always, just for now. One day at a time.

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.

Don’t You Forget About Me – It’s Personal

Don’t You Forget About Me – It’s Personal

Meg

As I mentioned in a prior post, I put a bunch of resources together in a Dementia & Caregiving Resources link on this site for anyone in a dementia-related caregiving role. Some I have used, others I just have come across in the last decade of being a caregiver to my mom.

When I started this journey I hardly knew where to turn. I needed a whole new vocabulary, and a pretty abrupt redirect from wiping baby bottoms, facing my own newly diagnosed auto-immune disease, and trying to get back into the workforce. For a long time – too long – I tried to juggle it all, not understanding that even when I wasn’t earning a paycheck I was still a “working mom.” But that’s another story.

The Dementia and Caregivers resources page is intended as a starting point for anyone in my 10-years-ago-self’s shoes, while acknowledging that it’s not comprehensive or vetted and that each person’s experience, needs, financial latitude, relationship to the dementia patient, etc. will be unique. I understand that in the early days/years after a dementia diagnosis there’s both a desire/need to create a plan and know what to expect toggled with intense overwhelm and grief. If you peak under too many stones too early what you see can be unimaginable and emotionally paralyzing. While I recognize that, hopefully readers can take what they need when they need it from these resources and reflections. It is very, very hard to face any of this.

For context on my own experience, I have had to learn not to try or to expect to be an expert in ALL things ALL the time. I simply don’t – and can’t possibly – know everything there is to know about caregiving for someone with dementia. Doctors tend to reel off medical terms and medications like I, too, have a medical degree. MMSE (Mini Mental State Exam) score? Namenda versus Aricept? ADLs (Activities of Daily Living)? What on EARTH are people talking about? I felt like I needed to know more than I did – for a time, that I SHOULD know more (the directive of the word “should!” rises again) so I did what I do, which is to carpet bomb with questions everyone and everything I could. I attended a caregiver’s course through the Alzheimer’s Association; I visited assisted living facilities to see what they were like, what they cost, how long the waitlists were; I talked to my mom’s doctors from neurology to primary care right on down to allergy and ENT, not to mention lawyers and health insurers, property insurers and banks. And, oh my gosh, Medicare and the Social Security Administration – God help us all. Those frequently left me in tears because damn if they don’t make an already difficult situation so much harder.

I used the Alzheimer’s Association helpline once very early on – it was free so no harm no foul. It was nice to be listened to, but without firm answers or a checklist my anxiety spiraled. They sent me reams of paper with lists of assisted living homes and god knows what else that just left me totally overwhelmed. As I recall it, there was no context to anything they sent about how to choose what would be a good fit for our family and budget, how to narrow the list down, questions to ask, when to even start thinking about this step. What I wanted was a guide, a timeline, and a checklist. Probably a good social worker could have provided a lot of that, but somehow we slipped through the cracks and were not assigned to one. Okay, I take that back, we were given a contact at my mom’s neurologist, but she never gave me the sense that she was really listening to me nor offered any actionable steps to address my concerns so it felt like we were not assigned to anyone. Plus it’s so incredibly hard to actually reach a human being at a doctor’s office. You can choose all the options you want when you dial in, but you are still going to end up in voicemail. And if the call is ever returned you are inevitably standing in the middle of the grocery store or holding a kid on the monkey bars at the playground when it comes. I gave up on her pretty quickly, and at the end of the day slogged through most of figuring out what comes next feeling pretty alone.

I should note before I go on that the definition of “senior,” “elder,” and “geriatric” get kinda squishy at this stage of the game. I mean, 55+ housing is often marketed as “senior” housing, which given my viewpoint of the calendar of life right now is pretty laughable. 55 isn’t old and so, therefore, perhaps maybe neither are seniors? I don’t really know anymore, but I do know that those terms can be triggering, no one wants to labeled any of them really, but apparently that’s where we are all headed and sooner than we might think. SO, as with most labels, don’t hold onto them too tightly.

At a certain point when my mom still lived 300 miles away, I worked with a couple different geriatric care managers (GCMs), which is a type of social worker specifically focused on elder care (and therefore typically familiar with all the dementias), a resource that I reference in the Dementia and Caregivers Resources link. I thought once I hired a GCM that I’d be able to kick back and reprise my role as a daughter while watching all the issues and decisions I was facing evaporate. Sadly, that was not the case. I still had to call all the shots, but now I was being billed an hourly rate every time I picked up the phone or sent an email discussing options. I mostly felt like a middleman but with really big bills. Maybe GCMs are kind of like travel agents. Do you need them in this day and age where everything is online? Not really. Can they be super helpful whittling down options, creating tasks lists, and making a plan tailored to your family and your needs out of the amorphous blob that is information overload? Definitely. At the stage where I hired my GCMs I had pretty much already planned the trip, so to speak, so didn’t feel like I was getting much value from them. In the early stages when I had no idea what to do and they were willing to listen as I slowly lost my own mind, they were incredibly helpful and I owe a debt of extreme gratitude to the GCM who took my calls in those early days and offered me a steadying hand and a sympathetic ear. Though the later stages were a miss for me, this is not the case for everyone. Some of the references I called before hiring a GCM said they absolutely could not have cared for their loved one without them.

Like I said, everyone’s needs and circumstances are different. Caring for people with cognitive issues is intensely difficult- it’s emotionally devastating, impacts all aspects of their lives and their family’s life, can go on seemingly forever with modest declines (or go super quick – and no one can predict what you are going to get or how it’s going to play out), there are no days off, and it’s extremely expensive. You grieve and live and care for them all at once, often for years on end. Hence, the support resources.

Lastly, if you are at all like me and caring for someone with dementia who is genetically linked to you, you might find that you can’t help but worry about what the future has in store for your own brain. It seems that the suggested course of action, since there isn’t really anything else yet, always comes back to a healthy diet, exercise, and socialization. The metrics of those recommendations are a little fuzzy, but generally what’s good for the body is good for the mind. Now the McCance Center at Mass General Hospital also has a Brain Care Score that offers a somewhat more personalized, science-driven approach to measuring and enhancing brain health.

Good luck. And don’t forget to breathe through it all. It does actually help.

Don’t You Forget About Me Part III – Resources

Don’t You Forget About Me Part III – Resources

Meg

Just a quick note here to say that I have added an entire drop down menu for various types of resources about dementia and caregiving. So check that out from the homepage menu.

Also, I had no idea that Rosalynn Carter noticed and has been addressing the hard work of caregivers for over 35 years. Until she passed away on November 19, I only vaguely knew who she was, and mostly it was as a team with former President Jimmy Carter. Today, as she is laid to rest, seems the best day of all to recognize the incredible contributions she has made to this world.