Nobody Told Me: Love in the Time of Dementia, S.R. Karfelt

AFTER MILLENNIA OF marriage and centuries of children, I thought I understood love. Dementia is teaching me so much more about it. It reminds me of that quote from Alan Bennett in The Lady in the Van, “Caring is shit.” It’s said while he’s fussing about the problems with the homeless woman living in a van in his driveway. Low brow as it might sound, I found it rather profound. Shit. You have to put up with a lot of it for love. You give it and you get it. Marketing and movies focus on the pretty parts of love, but there are all sorts of love and a whole lot of it isn’t pretty.

51dushu4z4l-_sx337_bo1204203200_Love is hiding in the lounge at assisted living and writing your mother-in-law’s name on her underthings so they can be sent to the laundry.

Love is Juan, after weeks of international travel, dragging his jet-lagged bones to assisted living and sorting through the hodgepodge of his mother’s clothes, teacups, and papers, and taking down all the wall art he spent hours putting up.

Love is Plan B or C or D or whatever we’re on now. It’s a Spartan plan. That means no decorations, just a couple boxes of pictures. 

Love is realizing that making Gummy’s new home like her old one was our ideal. We don’t know Gummy’s ideal, and she can’t remember it.

Love is realizing what used to comfort doesn’t anymore. Gummy’s been giving her teacups away. She doesn’t recognize that they belong to her. She hides them in drawers to keep them safe. Later she panics because they are disappearing.

Love is the nurses and aides who get hit and scratched by patients with dementia, and take it in stride.

Love is adult grandkids who get slapped by a grandmother who’s doted on them, and forgive, and comfort their grandmother in her dementia-fueled anger.

Love is people who take time out of their days to spend time with people who suffer from this disease. Especially those who give so much of themselves to Gummy.

I just love her, they say.

Maybe she can’t remember their names, but she remembers the love part.

Because people are people and love isn’t forgotten, even when particulars are. People suffering dementia still need love. It doesn’t look anything like the Hollywood version; it looks like work. Feels like it too.

Real love is messy and hard sometimes, but it’s all we’ve got. Yes, we love her, and, yes, she’s giving us a hell of a lot of shit. (loc 1561)

My grandparents were diagnosed with Alzheimer’s (both grandfathers) and dementia (both grandmothers) way before anyone else we knew was heading down this particular medical rabbit hole. My parents – both only children – were under the crippling burden of caring for their parents just as all of their friends were enjoying becoming empty nesters. I got to witness, for over a decade, two of the very best people I know share a terrible weight as they watched the people they loved best in the world slip away in agonizing fits and starts.
As my mother sometimes jokes (now that the worst of it is over, and their parents have passed on to what I dearly hope is better than the hell that is dementia), “At least we got a book out of it!” And we did. It’s called Caring for Ourselves While Caring for Our Elders, and she and I wrote it in partnership with a psychotherapist named Leann McCall Tigert in 2007, when we were still in it neck deep with my grandmothers. In the book, my job was to document what it was like to watch the so-called Sandwich Generation deal with the enormous stress of caring for both parents and children. Spoiler alert: it’s tough. It’s not, however, anywhere near as difficult as being the person doing the caregiving (a fact I grasp much more fully now than I did ten years ago).
I often think about my grandparents, who were so integral to my life, as I watch my parents and in-laws with my children. I remember them as the vibrant people they were when I was a child, and I also remember them as the vulnerable, sometimes difficult people they were in their late eighties and nineties – the deaf (my father’s parents) and the blind (my mother’s), the memory deficient (all), and eventually, the frail. I loved them all fiercely, and I was also angry at them because caring for them aged my parents just when they were supposed to be free.
The worry was everpresent. Every time the phone rang, disaster lurked. Trips were few and far between. Vacations were nonexistent. It was very much like having a baby, except that it was heartbreaking. These intelligent, compassionate, fascinating people were left greatly reduced by dementia, and yet even at the very end, there was so much love and appreciation on both sides.
I’ve never read a book that conveyed the balancing act better than Karfelt’s did. I put off reading it for a few months because I didn’t want to be sad; when I finally started though, I couldn’t stop. I must have recommended it to twenty people by the time I finished. I put countless bookmarks in it. I highlighted. I laughed. I read passages aloud to my husband to explain why I was weeping. I called my mother up multiple times and told her, “This was you! She’s you!”
When I finished, I felt as though a piece of my soul had been seen and recorded. The loneliness of dementia – of caring for a person with it, of having it, of hurting as it erodes familiarity – she captured it all. She made me think again about what it must have been like for my parents, about how deeply loving and present they were for so many years, about what a gift that was to my grandparents, and to my brother and me, even when we struggled with it.
Because people are people and love isn’t forgotten, even when particulars are.

A Beautiful Work in Progress, Mirna Valerio

I love my children. I love being a mother, a daughter, a wife, a sister, a friend. I love that I have so many people who surround me with their love and their support. I love that as much as I lean on them, they also need me.

But. I’m also an introvert. I gain clarity, strength, and patience from being on my own. I get giddy when the door closes and I find myself alone in my own home, or sitting quietly at my computer in a coffee shop surrounded by others who are happy to be together but separate, or standing in the predawn light with my running shoes on and a playlist queued up.

511rwxq1f7l-_sy344_bo1204203200_At this particular point in my life, none of those things happen. I have a baby who refuses to take a bottle (completely unlike my first kid, who couldn’t have cared less where his meal came from as long as it was efficiently provided), which means the only time I’m physically alone is on the rare drive over to the recycling center five minutes away. (If you were going to suggest “the bathroom,” well, you’ll have to excuse me while I die laughing along with just about every mother in the history of mothers.) Five months in with baby number two, and I’m ready for a return to a little much-needed mental and physical personal space. For me, it’s a matter of self-care, and recognizing how difficult it is not to have that right now is one of the things that keeps me sane.

I’m not looking for a vacation from my life. My people are a special and loved part of who I am, but I can tell I’m becoming less of my best self because I don’t have that time away from doing for and listening to and being present for others. I especially miss my morning runs. Those workouts used to be the cornerstone of my mental health, not because I’m a gifted runner, but because they required a certain joyful grit to accomplish.

We have a saying in the world of education, more specifically in the area of diversity, inclusion, and equity. It’s an axiom to live by. With it, we will be able to weather many things—inconveniences, moments of shame, those times when we make huge mistakes, when we drop the ball, when our kids embarrass us (or we them), when some occurrence forces us far from our own personal boxes of emotional comfort and safety.

Lean into the discomfort.

To my diversity brain, the phrase means to embrace what is difficult so that you may progress. Welcome what makes you frightened and what makes your heart rate rise. Greet that sense of uncertainty into your life so that you may explore yourself more deeply.

Lean into the discomfort.

To my long-distance runner’s ears, this axiom means embrace the suck. A lot of long-distance running sucks. But what sustains runners are those moments of beauty, those instances where you feel weightless and unencumbered. We embrace the suck so that we can fully embrace what doesn’t suck, to fully receive it. (pg 286)

Finding this book (recommended to me by my mother after I mentioned how out of shape and frustrated I was feeling) has been a godsend. I wasn’t familiar with Mirna Valerio before reading it, although I know now that she has a popular blog (which I’m now getting caught up on) and has been featured in publications like Runner’s World. I honestly can’t believe I didn’t know about her before this. A plus-sized black ultra runner? She’s definitely an outlier in her field, but as a woman who doesn’t fit the lean, long-legged stereotype of a traditional runner, her memoir inspired me deeply.

It filled a void I didn’t realize existed. To read about a woman who doesn’t run to lose weight, but for the sheer joy of covering huge distances over difficult terrain – it was exactly what I needed as I try to map out the next few months of my life, as I shake off the exhaustion and excuses of the newborn haze and kick myself back in gear.

Of course, it’s easy to read a book like this one, to pore over it each evening as the baby is falling asleep in my arms and the toddler is talking himself down in the next room, and to feel that burst of energy that comes from getting out on the road. It’s another to actually do it. I can feel myself stuttering and shying away from how hard it will be to coordinate, to regain strength, distance, and speed, and to learn a new skill (running with a stroller – another experience my eldest child had zero interest in trying). I don’t know how long it’s going to take me to get back to where I was, or to get to someplace better, and that’s frustrating. I want to have a plan in place, but I’m feeling out this new territory one day, one step, at a time. At least now, I can imagine Valerio, out on a treacherous trail in the dark of night, doing the same thing. One foot, then another.

What we are now is not what we were. Where we are now is not where we will be, unless we want to continue existing in the same reality over and over again. (p 299)

You Are Here: An Owner’s Manual for Dangerous Minds, Jenny Lawson

I’ve been reading The Bloggess (aka Jenny Lawson) for years now. My friend and I have even done our own dramatic readings of various passages from her blog (mostly to delight/terrify the kids in the youth group we were leading at the time). She is hilarious, irreverent, and even in the throes of her own not infrequent physical and mental pain, dedicated to the message the Depression Lies.  Her newest book, You Are Here, is a testament to that idea, and to the possibility that the coping mechanism a person privately uses to keep themselves alive might speak to a wider audience.

you-are-here-jenny-lawsonFor Lawson, her anxiety and depression are so severe that she often must keep her hands busy to prevent them from, in her own words, destroying her. She recognizes that she is her own most dangerous and unpredictable foe, and to combat her body’s desire to hurt itself, she draws. Her pen and ink sketches are as intricate and lovely as they are inspiring. In the year before this book became a reality, Lawson had shared a few of her drawings with her online audience and was surprised by how well-received they were. People were coloring them in and then sharing them back to the community, and each individual take on the original was a mini masterpiece in its own right – a whisper into the void of mental and physical illness that declared I am (still) here.

The drawing below is one of my favorites. Before I had time to read the whole book, I was looking through the pictures with my son, and we stopped on this because he’s obsessed with dandelions. He loves all things yellow, but especially flowers, and the weeds we find on our daily walks – the dandelions and the California bush poppies – are his favorites. He’s quite good at miming the blowing of dandelion seeds, although he’s neither dexterous enough to pick them from the dirt himself or breathy enough to dislodge any of the pods without the help of his fingers. Nevertheless, he doesn’t get tired of pointing out the fields of them growing near our house or watching when I pick one out to blow on.

bag2

I always thought I’d like to be a dandelion – those vivid yellow flowers that bloom in the cracks of sidewalks or abandoned lots. Anything that thrives in such strange, broken places holds a special kind of magic. It shines bright and golden for a moment before it withers, but then – when most have given it up for dead – it explodes into an elaborate globe of spiderweb seedlings so fragile that a wind or a wish sends it to pieces.

But the falling apart isn’t the end.

It depends on the falling apart.

Its fragility lets it be carried to new places, to paint more gold in the cracks.

I always thought I’d like to be a dandelion.

But I think, in a way, I already am. (p 59)

This book really found me at the right time. The last few months have been an onslaught of phone calls with friends who have received unexpected and advanced cancer diagnoses, unusual and unresolved test results for all manner of terrible health crises, and my own exhaustion/insomnia cycle that inevitably rears its head when I start to feel powerless to help the people I care about. It hasn’t made for the best start to the year, but reading this book and studying the images that literally saved the life of a person I greatly admire has been a powerful reminder. It’s not that the world is always good, or fair, or easy, but that each person in it – even those who seem beyond saving, or who sometimes wish they were beyond saving – have a place, a purpose, a unique voice capable of remarkable insight and empathy.

Today I changed everything.

Today I took a shower.

Today I kept breathing.

Circle any of the above that apply. They are all a celebration, y’all. (p 138)

Should I Still Wish, John W. Evans

I don’t know how the heart makes decisions. Maybe love is something born again in different bodies so it can keep moving forward. (loc 819)

It’s hard to write about a friend’s grief. John and I are not close, but I see him with his family often enough. His youngest son and mine went to daycare together for a few months. Practically a year before that, we were at a barbeque together in my neighbors yard, and all the boys – his three, our neighbors’ two – were running and screaming while the adults ate outside, me casting an ever watchful eye on the tiniest member of the wolf pack, who chose the moment right after my first bite to fill his entire bouncer seat with the kind of mess only the keepers of a bunch of boys could raise a glass of wine to, and laugh at.

51y1utsranl-_sx322_bo1204203200_He’s that kind of friend – a person I see at birthday parties and on Halloween, or occasionally when he’s picking up his kids from his mother-in-law, who lives just three houses down from us. I probably know her better than him now, since she often welcomes my wandering son into her home, overflowing, as it is, with her easy-going love and an abundant collection of dump trucks and stuffed animals. We don’t share close confidences or go on vacations together, but I enjoy both the John I see at the park or in an overcrowded kitchen and the one I encounter on the page. The one is boisterous and quick-witted, the other, neurotic and searching. When we stop to chat, he is confident – simultaneously the brilliant Stanford lecturer and the father of three bright, energetic boys. He is only overshadowed by his wife, who is one of the most straightforward people I’ve ever met. It’s hard to imagine her functioning at any level below excellence, and yet she makes me laugh and feel immediately comfortable and happy, a genetic disposition I envy, since I’m more likely to identify with the pen and ink sketches of John’s anxiety than with Cait’s welcoming competence.

Reading this book was an exercise for that anxiety. I simultaneously loved it and couldn’t stop thinking about whether I was intruding. Who am I to know how he and Cait fell in love, or how, eight years on, he feels when he has to enter the woods? Not a stranger, to enjoy the rise and fall of intermingled grief and joy from a distance, nor a close friend, who might already know these vulnerabilities scrawled so gorgeously across the page. I am in between. I think too much about it, and it makes me laugh because the John contained in these pages thinks too much too.

I suspect that people who know him better might gently urge that he live a little more in the moment, and that both of the women he loves, his first wife and his second, would not hold him accountable for either the highs or the lows he experiences. Such is the blessing of being loved by a non-writer. I can’t speak for painters or dancers or cinematographers, or their partners, but we writers are, in general, an overanalyzing breed. We run the bad connections on repeat as much as the good, our brains searching for what we missed, what we destroyed, what we could have done to make our lives easier.

My sister-in-law, a neuroscience post-doc, once simplified the science of it for me. She said, “You’re making the connections stronger, you know. Every time you rethink the memories, bad or good, you’re building them up.” And after that, I started a meditation practice for when the past crept up on me. I would instead imagine relentlessly a tree, or an expanse of sand, or a curled wave, until the urge to flagellate myself, or wallow, passed.

This works for me because I need it to – I need to live mostly on the peaks or trails right now, because becoming a mother has made my already thin skin translucent when it comes to the valleys of the world. There’s no room to punish myself for not knowing how to live perfectly in the past when the world is presenting, on a daily basis, a pain and degradation I could hardly have imagined even six months ago.

This spring, my son’s brother will be born into a different world, one overflowing with stories of grief rather than reconciliation – of John on the mountaintop paralyzed by tragedy instead of John on a street corner, raising signs of tolerance with his children and wife. We need both stories to remind us, however hard it may be, that we’re alive. Not every person we’ve loved, or every person who deserves to be, but us. We are here. We are a collection of the tragedies and exultations of existence. We are carved from the pain into a call for compassion, and we might fail a thousand times at joy, but it still exists, if we wish it.

Love Warrior: A Memoir, Glennon Doyle Melton

In the United States, we celebrate Thanksgiving today. For some people, that means a day of cooking, of family, of love or drama or both. For others, it’s incredibly lonely, whether they’re surrounded by people or not. Some will gorge themselves and watch football. Others will go hungry, or be forced to work at Black Friday sales that have bled over to the holiday. Some will be filled with gratitude while others are angry, frustrated, hurting.

love-warrior-fullc1There is no day, holiday or otherwise, with the overarching power to bring joy to all. Life isn’t like that. It isn’t fair. It doesn’t dole out goodness because the calendar demands it. That’s why – regardless of circumstance – we can all use a little of Glennon Doyle Melton’s wisdom today.

This is a gentle reminder that love and pain and grief are bundled together, that they are meant to coexist, and that you are not irredeemable if you feel more of the pain than you do the love right now. You are not broken. You are a warrior.

Fight on.

What my friends didn’t know about me and I didn’t know about my daughter is that people who are hurting don’t need Avoiders, Protectors, or Fixers. What we need are patient, loving witnesses. People to sit quietly and hold space for us. People to stand in helpless vigil to our pain.

There on the floor, I promise myself that I’ll be that kind of mother, that kind of friend. I’ll show up and stand humble in the face of a loved one’s pain. I’ll admit I’m as empty-handed, dumbstruck, and out of ideas as she is. I won’t try to make sense of things or require more than she can offer. I won’t let my discomfort with her pain keep me from witnessing it for her. I’ll never try to grab or fix her pain, because I know that for as long as it takes, her pain will also be her comfort. It will be all she has left. Grief is love’s souvenir. It’s our proof that we once loved. Grief is the receipt we wave in the air that says to the world: Look! Love was once mine. I loved well. Here is my proof that I paid the price. So I’ll just show up and sit quietly and practice not being God with her. I’m so sorry, I’ll say. Thank you for trusting me enough to invite me close. I see your pain and it’s real. I’m so sorry.

The Journey of the Warrior. This is it. The journey is learning that pain, like love, is simply something to surrender to. It’s a holy space we can enter with people only if we promise not to tidy up. So I will sit with my pain by letting my own heart break. I will love others in pain by volunteering to let my heart break with theirs. I’ll be helpless and broken and still— surrendered to my powerlessness. Mutual surrender, maybe that’s an act of love. Surrendering to this thing that’s bigger than we are: this love, this pain. The courage to surrender comes from knowing that the love and pain will almost kill us, but not quite. (p. 206)

The Accidental Terrorist, Confessions of a Reluctant Missionary, William Shunn

Over the month I took to read this book, I recommended it to twelve people. My husband was the first, and he’d finished it before I got through the third chapter. Two of the people I told were former Mormons themselves, and they not only wanted a copy but also told me they were going to pick it up for a few of their family members and friends back in Utah. The fact that I spread the word far and wide makes an odd kind of sense given this was the memoir of a questioning young man striking out on his mission in the great white north.

accidental-750pxI grew up with several Mormon friends (the Church of Latter Day Saints shared a parking lot with my high school, so we had maybe more than the average number of Mormon students for a small town in New Hampshire). Every single one of them could be described as the nicest person I ever met. Unfailingly friendly, kind, and considerate, I was never prosthelytized to or even subject to any conversation about God while with them.

Looking back, I don’t know whether it’s just that teenagers – even those growing up in a religion that expects generous time to be spent on the topic of conversion – just want to blend, to survive those four years without being labeled or judged, or if it’s that the specific people who would be friends with me were a little less devout. All I knew about them then was that we had fun goofing around in class and at play practices, and that they belonged to a church that required a lot more time than mine did.

It wasn’t until I started reading this book that I had any real concept of the history of the Mormon church. Shunn’s perspective is fascinating because he grew up loving and fearing his religion in equal measure. He had a great respect for those in authority and accepted the lessons he was taught until adulthood. I suspect that some of the information he shares in the book is considered sacred to Mormons, and his writing about it prompted a two-fold reaction in me.

On the one hand, I was incredibly curious about the secret rituals of the church. Ever since I first went to a service with one of my best friends, who’s Greek Orthodox, and was told women were never permitted to go behind a certain screen in the sanctuary, I’ve known I have an obsession for peeking behind the curtain. What could possibly be so sacred? A part of me burns to know, I’m sure in part because my own church is the complete opposite – everything on the table, free to access for anyone regardless of where they might be on their journey with God.

On the other hand, I have a deep respect for all religions, and although I don’t agree with every element of every faith, I do believe people have a right to practice with a sense of safety. People should be able to relax into their faith, to feel secure enough that they can explore a relationship with God, if they so choose. To make naked another faith against the will of its members makes me uncomfortable.

Shunn does an admirable job of balancing this, at least for me. That being said, I’m not a Mormon and have no concept of the history or tenets taught to members, so I recognize that I’m speaking about this as a wholly unaffected outsider. In that position, I found both his personal journey and the extensive history of the church and its founders to be fascinating. He pokes a little fun at the forefathers of the church but is respectful of his contemporaries. Both his story and Joseph Smith’s were absolutely captivating, and I intentionally only allowed myself to read a bit at a time so I could process what I was learning.

I realize it would be in poor taste to make a joke about bringing this book from door to door, but it’s truly been impossible not to want to share it with as many people as I can. If you’re looking for a book to rev up for fall after an indulgent summer, this is it.

Brown Girl Dreaming, Jacqueline Woodson

My theme this spring has apparently been “start great books I don’t have time to finish,” and Brown Girl Dreaming is no exception. This was a gift from my mother-in-law at Christmas, and although I started it over a month ago, it’s too beautiful to rush through. This hardcover has come with me for a much needed haircut, in the stroller to the park, and out to the grill when I was supposed to be keeping an eye on the food, and that’s saying something since I’m much more accustomed to making use of the Kindle app on my phone.

51-pl9bj7il-_sx331_bo1204203200_Written in free verse, Woodson’s perfectly paced memoir is exquisite. Having put together my own memoir in verse a few years ago, I recognize how difficult it is to make every piece as strong as the previous one, and she puts my meager efforts to shame. How she does it – I can only imagine how much work went into telling this story. How she must have agonized and organized and overwritten in order to eventually prune down to this one exceptional volume.

When it comes to books like this, it’s hard not to get lost in considering the craft behind it. In some cases, peering behind the curtain might mean a book is lacking in some way – the reader is distracted by all the bells and whistles – but in this case, it’s more like examining a butterfly’s wings. The detail makes the experience richer. Woodson’s technique is fascinating, and I want to both bathe in it and somehow make it my own.

Her experiences growing up both in the north and the south also give her a unique perspective on the racial tension that was exploding across the country then, and which we still feel the effects of today. I only hope this book makes it onto reading lists in schools every year, because when I was a child, I had the privilege of thinking this discussion was only a part of history, when my friends and classmates knew differently, from experience.

Woodson writes her truth in a way that is accessible and beautiful. Her story is one children can both enjoy and understand from a young age. For an older audience, it’s a wonderful jumping off point for challenging conversations about discrimination in this country while encouraging hope and love as the bedrock on the path to justice.

South Carolina at War

Because we have a right, my grandfather tells us-
we are sitting at his feet and the story tonight is

why people are marching all over the South-

to walk and sit and dream wherever we want.

First they brought us here.
Then we worked for free. Then it was 1863,
and we were supposed to be free but we weren’t.

And that’s why people are so mad.

And it’s true, we can’t turn on the radio
without hearing about the marching.

We can’t go to downtown Greenville without
seeing the teenagers walking into stores, sitting
where brown people still aren’t allowed to sit
and getting carried out, their bodies limp,
their faces calm.

This is the way brown people have to fight,
my grandfather says.
You can’t just put your fist up. You have to insist
on something
gently. Walk toward a thing
slowly.

But be ready to die,
my grandfather says,
for what is right.

And none of us can imagine death
but we try to imagine it anyway.

Even my mother joins the fight.
When she thinks our grandmother
isn’t watching she sneaks out
to meet the cousins downtown, but just as
she’s stepping through the door,
her good dress and gloves on, my grandmother says,
Now don’t go getting arrested.

And Mama sounds like a little girl when she says,
I won’t.

More than a hundred years, my grandfather says,
and we’re still fighting for the free life
we’re supposed to be living.

So there’s a war going on in South Carolina
and even as we play
and plant and preach and sleep, we are a part of it.

Because you’re colored, my grandfather says.
And just as good and bright and beautiful and free
as anybody.
And nobody colored in the South is stopping,
my grandfather says,
until everybody knows what’s true.