Not-So-Expert Advice

It’s been a year since my last blog post. I’ve wanted to write many times this year (in fact, I have written, but I’ve never posted anything). I have a million reasons (excuses?) for not posting, but there’s one in particular I’d like to share (confess?):

I’m afraid I don’t have anything useful to say.

Before you tell me I’m a silly girl and of course everyone wants to hear my story in Show-and-Tell, let me explain.

I’ve written a good bit about my mother’s dementia in this blog, and I’d like to think I’m helping foster a better understanding of what dementia is and isn’t. I want to see myself as an activist-crusader for person-centered care, or an innovative care partner with new ideas to help make the world safe for people with dementia. I’ve even spoken at caregiving conferences, and I’m planning to do that again in September.


Something new has crept into my caregiving journey with Mom: humility. Not that it wasn’t always there in some form; dementia has a way of knocking you off your high horse. It’s just that as the years go by, I find myself around people who are doing amazing work in the field of dementia awareness, people much better qualified than I am to be crusaders for the cause. People who are actual experts. People like Karen Love and Jackie Pinkowitz at the Demenia Action Alliance; Teepa Snow at Positive Approach to Care; and the many smart, generous, feisty people with dementia who are starting to blog about their own journeys. (Yes, it’s possible to have a dementia diagnosis and still blog.)

Topping the list of people whose writing I admire is Dr. Elaine Eshbaugh, a gerontology professor at the University of Northern Iowa whose blog, Welcome to Dementialand, is the first resource I would recommend to anyone, anywhere, who might at any time interact with dementia. In fact, I authorize you to stop reading this blog right now and head over to Elaine’s. Go ahead. You won’t be sorry.

Still here? Okay. I’ll tell you what I think I can write about, and maybe you’ll let me know what you think. (You can always check out Elaine’s blog later.)

I can write about my feelings, my observations, my personal experience of my own mother’s dementia. Though there are symptoms and behaviors that nearly everyone with dementia shares, I’ve come to understand that the way they play out varies from person to person, depending on their circumstances and relationships. All I can chronicle here is my own path, including the specific conditions of my daily life: a career in the arts, a marriage to my junior-high-school sweetheart, a 21-year-old offspring, a house in the suburbs, a cat, and a mother in assisted living.

I’m not a professional caregiver, working a stressful job in an understaffed nursing home; I’m not a harried working parent whose mother-in-law just moved into the guest bedroom; I’m not a gerontology professor. I don’t have dementia myself. Other people can speak eloquently about those situations. I can’t. Sometimes I can’t even talk about dementia; I need to walk away from it and pretend it doesn’t exist. However much I’d like to change the landscape of dementia care, I don’t think I’m cut out to be an activist-crusader.

Dementia has made its presence known in my life, and I’m dealing with it. I can share that. If dementia has shown up in your life, I can witness to the truth that you’re not alone. If it hasn’t, I can gently remind you that it probably will someday, and that when it does, you’re going to be humbled by it. And that’s okay.

Humility is a good thing. It’s one of dementia’s gifts, delivered periodically like a fresh bouquet of flowers, reminding us not to take life so seriously. We can’t all be experts. Let’s just be ourselves, shall we?

June Sparks, Mother's Day 2018

Mother’s Day, 2018

P. S. I really meant it — you should check out Elaine’s blog! I don’t know her, I don’t get any money from her, I just think she’s great. Here’s a post to get you started: Tips on Communicating in Dementialand. Tell me what you think!

Parallel Perfection

Somewhere out there, in a parallel universe, is a version of me who has it all figured out. She’s perfect.

This person works 40 hours a week at a well-paying job. She’s an exemplary employee who regularly wins awards for her innovative contributions to her company, a Fortune 500 corporation making major strides in social justice, arts, and environmental protection. She never gets frustrated or bored, never gives up on a project, and knows exactly what she’s doing at all times. She never doubts herself. Her work matters, and she knows it.

This version of me keeps a clean and tidy home that was once featured in a magazine with a name like Urban Cottage or Eclectic Nest. There’s an organic garden out back, or – why not? – out front, landscaped into the front yard, with perennials blooming along the curb and free tomatoes for neighbors taking their evening stroll.

She’s healthy and strong, gets plenty of exercise, and eats only nutritious food, except for the occasional exquisite dessert, which she savors with her best friend on the sun-dappled patio of a trendy coffee shop.

She sings well. She plays a musical instrument. She can tap dance.

She’s a writer, of course, who blogs regularly on important social issues and shares insights that change people’s lives. She always has brilliant ideas for her blogs, and never wonders if she’s only putting out drivel to feed her own ego. Her writing serves others. She doesn’t care that blogging takes time and pays nothing, because she’s above money, and anyway, she has that great 40-hour-a-week job at that great company, so who cares if she spends her free time tapping away at her laptop instead of working?

This person, this alternate self in a parallel universe, lives to taunt me.

“Why is your house such a mess, Carolyn?” she demands. “You were going to clean off the kitchen table two weeks ago; why is that pile of papers still sitting there? What is in that pile of papers? Bills? Tax documents? Invitations? What have you forgotten to do this time?”

She prowls the self-help and business shelves at the library and watches TED talks about self-improvement. Then she calls me, from the sun-dappled patio of the trendy coffee shop in her parallel universe, and questions my choices:

“Why don’t you make more money, Carolyn? Don’t you realize you have a good education and marketable skills? And don’t give me that ‘I work in the arts and change lives’ nonsense. That’s no excuse for a sub-par income. Haven’t you ever heard of doing well while doing good? Get a real job, and do your little frou-frou artsy thing on the side.”

She’s not impressed with my theatre career.

“Well,” she scoffs, her voice becoming ever-so-slightly shrill, “if you’re not going to get a real job and make more money, are you at least developing as an artist? Have you practiced a musical instrument today? Have you read any new plays? Do you have any auditions coming up? Projects you should be prepping for? Are you marketing yourself aggressively? What about that cute little theatre company you’re pretending to run? Done anything about that lately?”

She sighs and turns on NPR, or networks with an activist friend, then calls to check on me:

“What are you doing for the world, Carolyn? Don’t you think it’s time to choose a social issue and put some muscle into solving it? And no, that little monthly contribution to the homeless ministry is not enough. You need to get out there on the front lines and do something, or admit you’re a social justice coward. And by the way, if you made more money, you could contribute more. Real Job. Just saying. Think about it.”


This weekend, I took up her last challenge and went on a volunteer trip to El Refugio in Lumpkin, Georgia, a hospitality house for people visiting loved ones at Stewart Detention Center. Oddly, Parallel-Universe-Me didn’t come along.


She might have realized she wasn’t needed. Or maybe she dropped in briefly, got bored or depressed, and left. Because there in Lumpkin, life slowed almost to a halt. I had no cell phone coverage, no television, and spotty access to the internet. There was not a trendy coffee shop within twenty miles of the place, and it didn’t matter. All that mattered were the people who stopped by and the stray cat in the back yard, struggling to nurse her kitten.

I had a quietly powerful weekend. I didn’t make any money, create any art, or change any lives. All I did was cook meals, make up beds, offer hospitality, and feed that poor cat, even though I probably shouldn’t have. I visited a young man in detention. I met an immigration attorney doing his best to get people out, against almost impossible odds. On the way home, I left my wallet at a truck stop and had to go back and retrieve it, and I didn’t care; stuff happens. Compared to what people were dealing with at Stewart, my mistakes and inconveniences seemed insignificant.

Monday morning, I logged on to the internet to see what had happened while I was gone, and realized I’d missed the Tony Awards, the signature event of the Broadway theatre season. I don’t really care; I can catch clips on youtube. But Parallel Me thinks I should care, and sees my failure as proof that I’m not taking even my frou-frou arts career seriously. Sure enough, a voice cried out from the parallel universe:

“Oh my God, Carolyn, you missed the Tony Awards? You didn’t even realize they were on last night? What were you thinking? What kind of theatre person are you?”


I will never be good enough for her. Never. She can taunt me till the end of time from her sun-dappled throne in the sky. I will never do enough, earn enough, succeed enough, or create enough to satisfy her.

But that’s okay. I don’t live in her world. I live here, in the real world, where stray cats and human beings struggle to survive, where ordinary people do ordinary work and always fall short of perfection.  This will have to do.


The Lord Be With You

As I write this, it’s Sunday morning here in metro Atlanta. I’m still in my pajamas, but pretty soon I’ll have to get up from the computer, pull some clean clothes out of the dryer, turn on the iron, and get ready to take Mom to church.

Church has been a source of comfort and gratitude for me since Mom developed dementia.

I grew up in the Episcopal Church. Literally — I was born while my dad was studying to become a priest, and spent my childhood attending weddings, funerals, and every kind of service in between. Mom was as devoted an Episcopalian as Dad, maybe more so.

When she moved to Atlanta, she left a thriving church community behind, so it was vital that we find her a religious home. She settled with me at Church of the Epiphany, a quirky, liberal Episcopal outpost between Atlanta and Decatur. One of the things I love about my church is that no-one there expects me to have this God thing figured out. Church is a place where I can take my doubts, my fears, my frustrations, and my cognitively confused mother, and feel like part of a community.

Mom knows the services by heart. She can still find the pages in the hymnal, and she loves to sing (off-key, but that has always been part of her charm). She is enchanted by all the children who come to the altar for communion. We have communion every Sunday, and children are welcome long before they understand the meaning of the sacrament. Which is a good thing, because I’m 55 and I don’t fully understand it myself.

I don’t actually understand much about the faith of my childhood, which has become, by default, the faith of my adulthood. It’s more a religious practice for me, a showing-up-and-going-through-the-motions that somehow connects me with something larger than myself (even if it’s only the community of other people going through the motions with me).

But I do know this: my quirky, eccentric church community has embraced my mother. They have made her life more meaningful than it ever could have been without them. They love her unconditionally. When we pause in the midst of every service to greet each other, they line up to hug her.

That makes my life as a caregiver sweeter than my church friends can imagine. Some of them probably think I’m brave and saintly to bring my poor elderly mother to services. Well, guess what: I may be a little brave, but I’m no saint. I don’t want to get out of my pajamas, this Sunday or any Sunday. If it weren’t for Mom, I’d probably skip church. Heck, last week we went to the Church of Waffle House.

But I’m going today, and again next Sunday and the Sunday after, if I can get my lazy self out of bed. Because at church, Mom knows where she is, what she’s doing and why she’s doing it. She knows that she is loved, and she has an outlet for all the love she wants to give other people. She may be deaf; she may not be able to hear the sermon or understand the announcements. But she’s part of a community and a tradition that existed long before her birth and will continue long after her death. She’s an Episcopalian. She’s a child of God. And that is enough.



An Open Book

My husband and I hit the road recently to visit his mother, who has moved into a nursing home. She’s been in assisted living for several years, but she recently fell and broke her hip, so she needs more care.

I haven’t written about my mother-in-law, partly because her life is her own business, and partly because I’ve been focused on my own mother’s journey. But she is a piece of my dementia-care puzzle. She’s one of the many reasons I’m passionate about old people.

My “other mother” Charlotte has been part of my life since I was 13. My husband and I grew up on the same street, and one of our earliest dates was baking cookies in this woman’s kitchen.

With a degree in fashion design, Charlotte was an accomplished seamstress (her last-minute repair of the best man’s tuxedo pants saved my wedding). She was also a gifted kindergarten and first grade teacher. She could take children who seemed hopelessly lost at school and turn them into readers. Her classroom was a safe, loving place for children from all walks of life – rural farm workers, immigrants, townies – anyone who needed an education in her little corner of Georgia.

Charlotte treasured books. She taught her students to love the feel of a book in their hands, to treat books as almost sacred objects. “Don’t leave that book on the floor!” she’d cry. “Take care of it! Treat it the way you would treat your best friend!” She also adored animals of every kind, and was never without a pet.

This woman now lives with dementia. Her condition is different from my mom’s. Mom almost certainly has Alzheimer’s disease. My mother-in-law’s dementia is probably the result of multiple mini-strokes over the course of decades, one of which left her unconscious for almost twenty-four hours.

She’d like nothing more than to move back into the house she was living in when her cognitive problems began – the same house where my husband and I baked those cookies forty years ago. She’s angry that her house has been sold, angry that life has taken this bizarre turn. Why can’t she go home? Why did we sell her furniture? What have we done with her mother’s silver?

It must be so frustrating for her. It’s certainly frustrating for the people who care for her.

We recently found something that seems to lift her out of the anger for a while (besides pictures of her grandchildren, which have always helped). She still loves books, especially large photo books, the kind you put on your coffee table for a few years and wind up donating to the thrift store — National Geographic books, Life Magazine albums, art museum catalogs, old comic strip collections. And of course, books about animals.


My husband snatches these up from libraries and thrift stores, packs them in a rolling suitcase, and takes them to the nursing home. They bring Charlotte a few moments of joy, a chance to forget her disappointments and lose herself in a good book. I don’t know how much longer she’ll be able to enjoy them – she’s very withdrawn – but for now, they provide a tiny window into a world she loves, a world where books are treasures and she is still the patient woman who taught so many children to read.


Broadway Baby

I’m in rehearsal for a show at Atlanta’s Horizon Theatre, and I feel like the luckiest girl on the planet.  I’m working on a terrific play, with smart fellow actors and my favorite director, at a theatre with loyal subscribers and a funky, artsy vibe.  After a long dry spell of unemployment, I’m an actor again.  In fact, a few short weeks ago, I was on Broadway.

No, not that Broadway.  This Broadway:


This Broadway is in Grand Marais, Minnesota.  My family traveled there in August to take classes at the North House Folk School, where I learned about brick-oven baking and timber framing, and my teenage daughter learned to sail.  All in one fun-filled, kayaking, hiking, biking, rock-skipping week.

Grand Marais has a long history as an arts-friendly community.  It’s located on the North Shore of Lake Superior, and the natural beauty surrounding the town is breathtaking.  No wonder so many artists travel there to paint, sculpt, build, take photographs, and write. For a town with few streets and fewer stoplights (I counted one), there’s plenty of art.  Even on Broadway:


Sometimes, when I’m feeling artistically insecure, I deride myself for never making it to that Broadway, the big one, the real one. Or worse — for never even trying to work in New York. I tell myself I’m not really a professional, because I never endured the hardship of waiting tables in Manhattan, testing my skill and will against the hordes of other hopefuls pounding the pavement of the Great White Way.

Then I go somewhere like Grand Marais, and a simple street sign reorients me.  Suddenly I’m holding my own life-map, re-examining my choices, and realizing that the road that brought me here was my true path.

IMG_2849 I still dream of that big show, the one that starts in Atlanta and winds up in New York and proves to me — just to me, because nobody else is asking me to prove anything — that I’m a real actor.  But I know that show will never happen, unless I pursue it with all the passion and commitment I’ve poured into the life I am already living, a life that leads me to the shores of Gitche Gumee, where a stroll down Broadway with my husband and my daughter leads to the abiding rocks of Artists’ Point, and anchors me at last on solid ground.




Tap Dancing Uphill

Mom moved to an assisted living home three and a half years ago. She needed it, but she didn’t want it. (She wanted to be independent. We wanted her to be safe.) I had high hopes that this beautiful, well-appointed facility would provide her with a social life to replace the friendships she had left behind when she moved closer to my sister and me. For various reasons I’ll explain in another post, that didn’t happen, and she became dependent on family for social engagement.

She also became convinced that someone was breaking into her apartment and stealing her laundry. We watched to see if it was actually happening, but it wasn’t. Anything she couldn’t find, like her hearing aid or her glasses, had “gone out on a stolen basket of clothes.” There was no point in contradicting her; even if we found the missing object, she still believed in the mysterious clothing thief. Worse, she felt that the staff weren’t taking her seriously. “They tell me I’m lying!! They tell me I just don’t know where I put it!!” Irony: by trying to comfort her, the loving staff was making things worse.

I found that the best way to pull her out of this downward spiral was to leave the building. A change of scenery worked wonders. Thus, I became my mom’s social secretary. I have help: my sister and cousin are very involved, and my brother comes to town to provide us respite. But I have the most flexible schedule, so for the last three and half years, I have visited Mom or taken her on an outing five or six days a week.

A sample morning: I arrive at her little apartment. She’s on the sofa, looking dejected. She’s either playing solitaire or trying to work a Sudoku puzzle. Her eyes are red from crying; her hair is a mess, because she’s been pulling at it in frustration.

I say a cheerful hello and ask if she wants to go out with me. She says okay, but what’s the point, they’ll just steal things while she’s gone. I say I hope not. She stands up and says, “I don’t know what to do. I can’t stay here.”

Me: I’m sorry this is hard, Mom. (Hug her. Kiss her cheek. Look her straight in the eye.) What can I do for you?

Mom: Kill me.

Me: (Pause. Breathe.) Let’s go shopping first.

So we get her coat, and find whatever is lost (glasses, hearing aid, cane, key, it’s always something), and we head for the lobby. Sign out. Tell them we won’t be back for lunch. Climb in the car and drive to the thrift store, where she can buy whatever she wants without breaking the bank.

At the thrift store she miraculously cheers up. She is delighted to find four hardback books that look interesting. She turns to the clothing section and unearths two sweaters for me to try on. I find two pairs of slacks for her. We trundle off to the dressing room. (I have chosen this store specifically for its large dressing rooms, with benches where Mom can sit down.)

We decide to buy the sweaters but not the slacks. I know better than to argue with Mom when she wants to buy me something. We come out of the dressing room and discover a rack of used shoes. As I’m putting our purchases in the shopping cart, Mom takes off her tennis shoes and tries on a pair of brown leather flats that fit her perfectly. Hooray! One more goodie in the cart. She struggles to put her tennis shoes back on while standing (Red alert! Falling hazard!), and I suggest we sit down. There’s a bench across from the shoes.

Once seated, we’re safe; she can put on shoes without losing her balance. What she can’t do is stay focused with so many colorful things in front of her. So, instead of getting ready to leave the store, she’s trying on more and more shoes, sometimes the same pair over and over. I’m about to lose it when I spot . . . can it be? . . . high quality leather tap shoes in my size. And whoosh . . . I’m down the rabbit hole with my crazy mother, tumbling into Wonderland, trying on tap shoes and believing with all my heart that this time, surely, I will actually learn to tap. Is dementia contagious?!

We smile. We laugh. Somehow we manage to change back into our sensible shoes, pay for our treasures, and go to lunch. Which is delicious: old-fashioned Southern blue plate specials at the Our Way Cafe. We eat what we can and box up the rest for my husband, and I take her back to the assisted living.

On the way there, she slides back into paranoia: “I don’t know if I can stay here. I live in a den of thieves. I don’t feel safe.” Oh God, I’m thinking. All that fun, and I’m driving her back to hell.

I feel like Sisyphus, the ancient Greek ne’er-do-well who crossed the gods one too many times and was punished by an eternity of hard labor. He pushes a massive boulder to the top of a hill every day, grunting and sweating, only to have it roll to the ground again at night. Why am I pushing this emotional boulder? What have I done to deserve this? What has she done? Nothing, you say? Thanks, but that only makes it worse.

Yet I know I will push that rock up the hill again tomorrow. Why? My husband has watched me, and he says I do it for one simple reason. I like the view from the top.

He’s right. I like seeing my mom grin from ear to ear as she buys her baby girl a pair of tap shoes. I like bringing moments of joy to her life. But it can be exhausting, so I have to find ways to safeguard the rest of my life. To care for her, without making my life all about her.

And that, it turns out, is a very complicated dance.



I haven’t blogged in a while, and I was mentally berating myself for laziness, and worrying about everything I want to accomplish, when I decided to stop and read Dale Carnegie again.

Yes, again.

I am one of those people. I like self-help books. Hardly any of them say anything new, but the good ones don’t claim to. They simply distill the wisdom of the ages, or find a new way to phrase some common-sense precepts our ancestors took for granted.  When I’m feeling sorry for myself, I can count on a few to kick what needs kicking and get me back on track.

I have Carnegie’s How to Stop Worrying and Start Living on my Kindle, and I turn to it periodically for a refresher course on living peacefully in the present. Carnegie started teaching his principles for success almost exactly 100 years ago, but his accounts of “modern” men and women overcome by anxiety and worry could apply equally well today. We think we invented stress. We didn’t.

So here’s today’s lesson for Carolyn: there is only today. Worrying about what I should have done yesterday or need to do tomorrow is a waste of precious time.

Or as Mr. Carnegie puts it, right in chapter one: “One of the most tragic things I know about human nature is that all of us tend to put off living. We are all dreaming of some magical rose garden over the horizon – instead of enjoying the roses that are blooming outside our windows today.” 

Outside my window today are brown, rain-soaked autumn leaves, but I get the point. This is it. There is only now. What I haven’t accomplished doesn’t matter; what I will accomplish is yet to be seen. Whether I even accomplish anything today is not important, because today isn’t about me. It is around me.

I just have to pay attention to it.