The Joy of Not Knowing

I’m about to start a new acting project, and I’m scared. This is par for the course; I never start a new project without getting nervous. I always believe this will be the one that reveals, once and for all, that I don’t know what I’m doing.

Truth? I really don’t know what I’m doing. And that’s probably a good thing. Lately I’ve chosen to accept the gift of not knowing. The truest words I can find to describe how I’ve gotten to where I am are “I don’t know.”

Over the last five years, I have been involved in friendships and medical situations and even business ventures that ended differently from the way I wanted them to, the way I knew they should. I prayed weekly for three friends who had cancer, and within a year, all of them died. I struggled to find the best possible care for my mom’s dementia, and came to realize that what I wanted for her may not exist. I worked with a team of devoted volunteers to save a non-profit theater company from going under, and it closed anyway.

To my surprise, this didn’t make me want to stop praying. It didn’t make me want to give up on Mom’s care. It certainly didn’t destroy my commitment to theater. But it did all hurt. It did confuse me. It did leave me wondering, for a time, what’s the use? Where do I go from here? How can I be helpful in a world where my best efforts seem to fail?

The answer is, “I don’t know.”

I’ve always been a hard worker. Sometimes I think I work too hard. In the craft of acting, that’s called “pushing” — doing more than you need to do, so you’ll feel like you’re really making art. When a performance seems forced or strained, the actor may have the best intentions, wanting to give the audience a magnificent show. But his very brilliance can outshine the role, masking what was meant to be revealed.

This past summer I took an acting class that challenged me to simplify my own work to the point where I felt like I was doing nothing. I resisted, of course. I’ve been acting professionally for twenty-five years, and I have some habits that have served me well in that time. The instructor, Rob Mello, was asking me to strip all of them away and start fresh: in other words, to forget what I know, and trust what I don’t know.

I’ll never forget the night my resistance began to break down. It had been a difficult week with Mom, including a trip to the emergency room (she was fine, but I was shaken). I was feeling tired and defensive, and I had no energy for the night’s exercise. So I just did it, as simply as I could, and Rob said to me, “That’s it. You think you have to do so much, Carolyn, but you don’t. When you just let go and be present, it’s beautiful.”

Well, thanks.  And . . . ouch.  I mean, I’ve spent decades working hard. I thought I knew my craft. But he was right, and I’ve come to see the value in his words, far beyond the walls of an acting class:  “Let go and be present.”  They apply to relationships, to goals, to work, and — deeply — to dementia care, where being in the present moment with your loved one is the greatest gift you can give.

Someone has been posting hand-painted signs around Atlanta for several years now, a kind of folk-art graffiti written on wooden planks and nailed to telephone poles in seemingly random combinations. There’s one near my house that says “Donkey” on one plank and “Food” on the other. I don’t get it, but it’s cool. There used to be one in an area where I sometimes work; it said, “We Live on a Broken Street.” I don’t know if it’s still there, but it spoke to me.

My favorite, by far, is high up on a utility pole, next to the stop sign at the end of my mom’s street. We stop beside it every time we go from her assisted living to the shops and restaurants nearby. It’s a guidepost for me, a mantra, a reminder of how to live, how to approach each new project, including the one I’m about to start.  Maybe I don’t know what I’m doing.  Maybe I don’t have to.  Maybe, not knowing is the key.


Dementia: Five Things You Can Do (and some you can’t)

A letter to my younger self (and anyone else who’s starting a journey in dementia care):

Hello, my dear!

I’ve been thinking about you a lot lately.

As I picture it, you’re sitting in the conference room at the neurologist’s office.  They’ve done a thorough workup on your mother:  MRI, physical, blood tests, questionnaires. Now you have the diagnosis everyone expected: she has dementia. They actually say it’s mild cognitive impairment, which may or may not progress, but you know where this is going.

You know it’s progressive. You know your mom is going to experience the same things you saw your grandmother go through: memory loss, paranoia, anxiety, frustration. You are heartbroken, angry and scared. You love your mom. You want her to be okay, for her sake and for yours. Because this disease is going to change both your lives.

You think, if only we could turn back the clock to a time when Mom was healthy, or turn it even further back to a time when people got old and died before their brains were susceptible to dementia. If only we could speed up the clock and live in the future we all dream of, a future in which dementia has been cured, in which we all take a miracle vaccine at 50 and live out our days without cognitive impairment.

But you don’t live in that halcyon past or miracle future. You live now, and she lives now, and you are going to have to get through this. So let me give you a list of things you can do — and things you can’t — as you move forward.

  1. You can’t fix it. Dementia is real. Of course you are going to read all the books and go to all the support groups and learn all the techniques for dealing with dementia. You are going to give it everything you’ve got, because you don’t want your mom to suffer, and you are sure that if you just learn one more therapeutic intervention you will break through and she’ll be fine and everything will get back to normal. But it won’t.
  2. You can’t keep her happy all the time. You have spent a lifetime trying to keep her happy — happy with your school work, happy with your prom date, happy on your wedding day, happy with her grandchildren. Everybody wants a happy mom. But she’s a human being, and her emotions are going to fluctuate. Sometimes she’ll be sad or angry. Dementia is going to magnify those feelings. You can help her feel better, but you can’t make her life perfect. It never was, and it never will be, even if you miraculously become the perfect daughter, which is another thing you can’t do.
  3. You can’t stop living your own life. You have work and friendships and a family of your own. You have precious years with your own offspring. You may think you can sacrifice your creative life, but you actually need it more than ever. You need to make things, build things, craft things, learn things. You need to grow. You can’t let yourself stagnate, or you will succumb to bitterness and resentment.
  4. You can’t medicate it away. The medical profession has not come up with a way to cure dementia. All the pills can do is slow down cognitive decline (in some cases) and reduce some of the anxiety. You are going to have to make hard decisions about how much medication you’re willing to give your mom; you’ll learn as much as you can about what helps and what’s dangerous. But medication is not going to give her a meaningful life. Only human interaction can do that. It was true before her dementia, and it’s true now. More true than ever.

So what can you do, my dear younger self? What can you manage to accomplish in these remaining years with your precious, irritating, irrational, endearing mother? Well, here’s what I’ve discovered in the last five years:

  1. You can love her. Not every minute, not every day, and not perfectly, but yes, you can love her through this. You can hold her hand, sing with her, share meals with her, and get to know her just as she is.
  2. You can learn to slow down. You will hate this at times, because you like to go and go and accomplish what you assume are wonderful things. But just as you slowed down and suddenly saw the world in a new way when your daughter was young, you can slow down with the frail creature your mother has become. You can see the leaves change in autumn. You can marvel at the crisp, clear blue of the sky. You can laugh at silly jokes again. Life doesn’t have to go so fast.
  3. You can ask for help. I know, you like to be self-reliant. So does she. You’re just like her in that way. But look how bravely she is accepting your help, letting you take over things she always managed on her own. She is setting a fine example; follow it. Reach out to other people, to your church, to your friends. Work out that care schedule with your siblings. Ask for what she needs at the assisted living. You don’t have to do this alone.
  4. You can learn new skills. Maybe you thought you had learned all the life skills you were ever going to need by the time you were 50 and she was showing signs of dementia. Think again. You will be amazed at what you’re going to learn about spiritual growth, brain science, medical care, bedside manner, scheduling, financial planning, creativity, nature, music, art, and much more. Your education is far from over. Never doubt your capacity to learn.
  5. You can survive. You think this is going to kill you, but it won’t. It will kill her, in the long run. Something is going to kill us all, and that’s one of the many lessons this disease is teaching you. Death comes to everyone, with or without a certain amount of pain. Accept it. As you visit the assisted living, as you share your life with friends and family, you will experience many deaths. You will attend funerals and say goodbye to many beautiful souls. One day you will say goodbye to her. But your life will go on. You will stop at some point and realize that you survived this, that you grew through it, that you are a different person because of it. Why not stop and acknowledge that right now?

That’s what I’ve learned so far, younger self.  Actually, I’ve learned more, but I think that’s enough for one letter.  The rest is details:  how to lift her spirits, how to figure out what she can still do, how to take care of yourself.  We’ll talk about all that.  For now, I just want to tell you that I love you, I trust you, and I know you are going to be fine — because I am your future self, and you are the one who taught me all of this.

As for the rest of you, the ones just starting this journey — you are not alone. We all know someone with dementia.  We can all grow through this, if we accept that we are in it together.

And you are going to be amazed at the things you can do.

Love till the end of counting,


Mom's Team: my sister Juliana, Mom, my brother David, and me, at my niece's PhD ceremony. Life really does go on.

Mom’s Team: my sister Juliana, Mom, my brother David, and me, at my niece’s PhD ceremony. Life really does go on. Photo by Andrea Sparks.

Thrill Ride

Update: Mom is still with us. In case there was any doubt.

In the roller-coaster ride of dementia care, there are times when you think you’ve lost your loved one. Every time she can’t do something she used to be able to do automatically, you think, “Oh, she’s left us.” But she rallies, or you open your mind, or both, and you realize that although she’s different now, she’s still with you.

Flashback: When I was about ten, Mom took my friend Vikki and me to Six Flags Over Georgia, a huge amusement park. It was a two-hour drive from our hometown, so every visit was a special occasion.

In those days, there was only one roller coaster in the park, the Dahlonega Mine Train, and it was my favorite ride. My friends and I were accustomed to waiting in long, snaking lines to reach the platform, where we’d be strapped into mine cars by a gaggle of teenage summer workers, their adolescent swagger and easy camaraderie adding to the excitement of venturing underground without our parents.

This summer day, miraculously, the park was not crowded, and there was no line. Vikki and I rode that roller coaster once, twice, three times . . . and each time we emerged, we dashed back to the entrance, where my mother sat waiting for us on a shaded bench.

“Can we ride it again?” we begged, breathlessly.

“If you want to,” Mom said.

Vikki and I raced through the zigzag rows of handrails to the platform, and rode the mine train 36 times – a new record, at least for us. (We couldn’t wait to get to school that fall and tell our friends.)

Looking back, I wonder at the patience my mother had, sitting on a bench in the Georgia heat, letting two little girls run and ride in circles. By that time, Mom was probably already seeing glimpses of her own mother’s dementia, the roller coaster she would soon be riding.

It occurs to me now that we may have been in Atlanta that day so that Mom could take care of her aging parents. Vikki and I rode to Atlanta several times and played, while Mom tended to her dying father and demanding mother. Maybe that trip to Six Flags happened on a weekday when Nanny needed help with shopping or the checkbook. Maybe it was the day Nanny said her purse had been stolen and Mom found it under the kitchen sink. Whatever. It was a happy day for two little girls at an amusement park.

The thing about roller coasters is this: you have to roll with them. The ups and downs and crazy turns are built in. You can fight them, or your can put your hands up in the air, let the wind whip through your hair, and accept the fact that you are not in control. You can be terrified, or you can have fun.

Or both.

I still get frightened by Mom’s dementia. I think fear and frustration are built into the ride. I will never get used to seeing her abilities slip away. I will never stop feeling a clutch in my stomach when she’s distressed; in fact, I think I’m wired to react to pain in her voice, the way new mothers physically react to their baby’s cry. And because she’s my mother, there will always be things about her that drive me a little bit crazy. But I also have fun with her. In the midst of a long uphill struggle, she can still make me laugh.

The other day, when she was feeling particularly low, I put my arms around her and hugged her tight.

“I love you, Mommy,” I said.

She hugged me back and said, “Oh darling, I love you, too. If I didn’t love you so much I’d move in with you.”

Whoosh! The sheer joy of her joke – unexpected, truthful, wise – rushed up and propelled us forward. We broke into gales of laughter, like two little girls barreling downhill on their favorite roller coaster.

Oh yes, Mom is still with us. She’s right beside me, on the ride of a lifetime.

The Dahlonega Mine Train at Six Flags over Georgia. Photo c. 2005,

The Dahlonega Mine Train at Six Flags over Georgia. Photo c. 2005,


A Long Way to Go

I’ve traveled a lot this summer: to a Buddhist Cultural Center for a retreat about dementia care; to south Alabama for quality time with a dear friend; to the mountains of North Carolina for rest and relaxation; and finally to New York City for one last family vacation celebration before my daughter goes to college. The journeys remind me, naturally, of the path I am currently traveling with my mother.

I remmber the exact moment when my caregiving journey began. I was standing in the kitchen of my mother’s old house. I’d seen a prescription medication on the counter and asked her about it. It was Prednisone, a steroid, and she told me she was taking it for severe eczema, a skin condition I didn’t know she had. I’d seen occasional red marks on her hands, but she always wore slacks and long-sleeved blouses, so her skin was mostly hidden from sight. As she sheepishly took off her blouse to show me her arms and back, I saw that large areas were red and even scabbed, where she’d scratched them until they bled.

Okay, it’s time, I thought. I have to take care of her now.

She had been to a dermatologist in Chattanooga, a half-hour drive from where she lived, and he had prescribed the steroid pills and ointment. But she was angry with that practice (“They were rude to me!”) and she was having a hard time sticking to the strict medication schedule. Both her anger at a perceived slight and her inability to take the medication on time were early signs of dementia in an otherwise active, kind-hearted, highly intelligent woman.

So the journey began.

My siblings and I developed a mantra for Mom’s journey: “As much independence as possible for as long as possible.” She lived in her house for another year or so, then spent a year in a beautiful senior living apartment in our hometown, where we hoped she’d be active but safe. My sister and I were only an hour and a half away, and all her friends were there.

I found her a dermatologist in Atlanta, and met her there when she drove down for appointments. This seemed like a win-win: she got to live independently, but I was there to keep up with her medical care and ask any questions she might forget. But the eczema never cleared up. I began to realize that until she had more help, this was going to be an issue, but that giving her more help might mean taking away her freedom before she was ready. Our win-win became a Catch-22.

One day she got lost on the way to an appointment, and though she found her way to me fairly quickly, she was rattled. I didn’t want to believe she should stop driving, but of course the writing was on the wall. I hoped she’d give up her car but stay in her apartment, where she had friends who could drive her to all her activities. But she announced that she wanted to be “closer to her girls,” and we began planning the move to Atlanta.

At that point in the journey we made a decision that has affected all of us in ways I wasn’t expecting. We chose to move Mom into assisted living, though she was physically very healthy (except for her skin). For me, it was a simple matter of logistics, combined with what I understood about good dementia care, which included a concept called “aging in place.” (This concept has come in and out of favor, but it made sense to me at the time.)

“Stay where you are as long as possible,” I told Mom, “because when you move to Atlanta you are going to assisted living. I want you in a place where you can stay for the rest of your life.” She agreed, but maddeningly insisted on the move, which I had hoped to postpone another year or so.

We chose a lovely facility with a memory-care unit (for later in the journey), and placed Mom in an apartment in the general-care section, where she could have her own bedroom, kitchenette, and living room, tastefully furnished with her favorite things from home.

But it isn’t home. She quickly started calling it “that place.”

She didn’t take to the activities, which are good, but nothing like the rich volunteer and social life she’d led with her friends. Nearly five years later, she still talks about wanting to move back to her former apartment (though never her house). When we’re on an outing and I tell her it’s time to go home, she says with a sigh, “Okay. Take me back to jail.”

And I get it. No matter how beautiful the facility, when you can’t drive and you can’t even walk out the front door alone (for your own safety, of course), you’re a prisoner. This is sad for her and frustrating for us, because we’ve become responsible for tending to Mom’s social and emotional well-being in ways we never expected. We do it gladly, but it takes a toll. It’s a rough part of the journey.

I’ll never know if we made the right decision to put her in assisted living when we did. I have a lot to say about the plusses and minuses of the current assisted living model. I believe there’s room for growth in our society’s approach to elder care, particularly emotional care, and perhaps I’ll share my thoughts on that in future posts. Of course, there’s room for growth in our society’s approach to many things – environmental issues, racism, and education come to mind, just for starters – so I don’t expect miracles overnight. But I do hope for change.

Still, with all its complexities and disappointments, assisted living has produced one genuine miracle: Mom’s eczema is almost completely gone. Now that she is on a medication schedule, and has the gentle hands of a nursing assistant to rub ointment on the occasional flare-up, Mom is free from the itching, pain, and bleeding that plagued her for longer than we knew. Thank you, Assisted Living.

So the journey goes. As I write this, I’m flying home from my last trip of the summer. I was supposed to be home yesterday, but runway problems at the airport required the plane to drop some weight, and I volunteered to be bumped to a later flight. As in dementia care, a problem also contained a blessing, as I gained time to read, think, and rest before returning to my journey with Mom.

We’re running into some turbulence on my physical flight. Mom and I will have more turbulence, too, on our metaphorical trip to her final destination. But it’s okay. My seat belt is buckled. Let’s continue the journey.

A ship on the Hudson, reminding me that journeys take many forms.

A ship on the Hudson, reminding me that journeys take many forms.

Have Camera, Will Travel

I’m back! I took some time off from blogging, but I’m ready to return to the written word. For today, however, I’m sharing pictures. I got a new phone (smart phone with camera!) and a new camera (just a camera!), and I’ve enjoyed documenting my adventures, including a retreat about dementia and two delightful excursions with my daughter. So here, in no particular order, are images from a life that seems to be always in a state of metamorphosis . . .

Box Turtle near Asheville, NC

Box Turtle near Asheville, North Carolina

Wild kitten near Asheville, trying out a new home

Wild kitten near Asheville, trying out a new home

Buddha and a buddy, Tibetan Mongolian Buddhist Cultural Center, Bloomington, Indiana


Ants making a home in Queen Anne's Lace, Asheville

Ants making a home in Queen Anne’s Lace, Asheville

Good Enough?

Hey, did you know that everyone makes mistakes? And that nobody’s perfect? Literally NOBODY, y’all. I keep learning this lesson, over and over and over and over and over. Specifically about myself, but it’s helpful to remember that it applies to all of us.

My dad, may he rest in peace, was a perfectionist. And when I say, “May he rest in peace,” I really mean it, because it’s hard to be at peace when you think you’re supposed to be perfect. It’s hard to admit that you’re not going to get everything right. Dad was great at so many things that I suspect he thought he had to be great at everything. He would start a new project, and then see that he wasn’t going to be able to do it perfectly, and leave it to finish later . . . and sometimes, for want of perfection, later never came.

I’m starting some projects right now. I’m not going to tell you what they are, because I’m afraid they’ll suffer the same fate as my singing recital. You know, the one I was definitely going to do in January?  If you’ll recall, I canceled it when I realized how far from perfect my singing actually was. I still plan to come back to it – to “finish it later”, if you will – but for now it’s on hold, because my standards are too high for my own good.

Kinda like Dad’s.

But Dad learned from his perfectionism, and by the time he was in his sixties, he had mellowed a good bit. He had an expression, probably from his early days in the Army Corps of Engineers, that got him through most projects: “Good enough for government work.” (Only he said “gummint work”, a reference to his beloved Pogo.)

When my daughter was born, Dad wanted to help me get over my own perfectionism and enjoy motherhood. Because he had studied psychology (along with engineering, philosophy, theology, etc.), he talked to me at some length about the writings of Donald Winnicott, who proposed the theory of the Good Enough Mother. You know what’s best for your baby, Dad told me. Perfectionism will only get in the way. Your child needs you, not some Stepford Wife version of the ideal mom.

Of course, my first thought was “Oh God, Daddy, why did you tell me that? Now I have to figure out how to be Perfectly Good Enough!” When you care, when you want to do things right, when a thing isn’t worth doing unless it’s done to perfection, it can be really hard to get out of your own way.

Despite my doubts, motherhood did create a pathway to a “good enough” mindset. Every day was a new opportunity to fall short of perfection. The baby cried and I couldn’t always comfort her. She threw up on my clothes and floor. Her needs took precedence over the housework and laundry. She would not go to sleep. She got ear infections all the time, and we had to choose between making her more comfortable with antibiotics and keeping her off of antibiotics so she wouldn’t become resistant to them. There were lots of ways for my husband and me to be good parents, but there was absolutely no way to get everything right.  We did our best and got on with it.

Good enough,” I would say to myself, at the end of a long day. And “Nobody’s perfect.” And the best phrase, the one I read in some parenting book and posted over the kitchen sink: “Nobody’s keeping score.”


Funny how things work out. Eighteen years later, my baby has been accepted at the college of her choice, and seems perfectly (that word again!) ready to leave the nest. Her “good enough” childhood has prepared her for life in an imperfect world, just as Winnicott and my dad said it would. If ever there was a moment to celebrate success, this is it.

Yet ironically, at this time when I should be resting on my laurels and breathing a sigh of relief, I am fighting the demons of perfectionism again.

Will my new projects be successful? Will my husband and I become the happy, productive empty-nesters pictured in the AARP Bulletin? Will I ever make Real Money? Will I find new ways to use my talents as I age into the next phase of my career? Or is my best work – as a parent, as an actress, as a person – behind me? There is so much I still want to do!

I can hear my dad’s voice saying, “What are you afraid of, Carolyn? Screwing up? Because you’re going to screw up. You have to get your heart broken. You have to be willing to fail. Perfectionism will only get in the way.”

It’s the voice of experience, and I know it’s speaking the hard, honest, but ultimately liberating truth. I know that my next task is to experiment my way into the future, doing my best, but not keeping score.

I was a good enough mother. Now it’s time to relax and be a good enough me.



If the Jeans Fit …

“Mom, there are things about you that annoy me, but we get along.”

It was a relief to hear these words from my daughter’s lips one night last week, as we stayed up late working on a project together. Truth – even unflattering truth — feels especially sweet these days.

Mothers do annoy their daughters; it’s written in stone somewhere. We help them too much or too little or in the wrong ways. We are too loving or too distant or simply too old to know what they need all the time. Our dirty little secret is that we are just people, living our own lives and falling far short of the ideal of perfect motherhood.

It’s good that my daughter and I can talk about this. She’s old enough to verbalize it, and I’m young enough to hear it. I want it to be part of our shared truth for as long as possible. Now that my mom has dementia, this is a truth I do not speak with her. I work hard not to let Mom annoy me, and not to show it when she inevitably does.

Just the other morning, as we were shuffling into Waffle House for breakfast, Mom made her usual generous offer to take me shopping. “I want to buy you some new jeans,” she said sweetly. “The ones you’re wearing are too tight.”

Wow, I thought. Thanks a lot. But I kept my thoughts to myself. “Shopping sounds like fun!” I said, heading for a booth.

Mothers shouldn’t comment on their daughters’ bodies, even – especially! – when their daughters are over fifty. We know this now, as a society, having experienced decades of eating disorders, fad diets, and ridiculous expectations. But as my sister wisely says, in Mom’s day, appearance was one of the vital things a woman had going for her, and raising attractive children was a sign of good parenting.

Mom valued a sleek form, neatly groomed. No make-up, no fancy hairstyles, no high fashion – my sister and I didn’t have to deal with any of that. We just had to be thin (but not too thin), keep our hair neat, dress attractively (but not too attractively), and have good posture.

“Stand up straight,” she told us. “Brush your hair a hundred strokes a day. And I really think you’ll feel better if you lose that little pudge.” She didn’t mean to annoy or hurt us. She was trying to help us succeed in a judgmental world. I guess she thinks she still is. She doesn’t know she’s helping too much.

If Mom had commented on my jeans ten years ago, I would have winked and said, “I like these jeans just fine, Mom, and so does my husband, so mind your own business.” Fifteen years ago, I would have bristled and said, “Mom, you are not in charge of what I wear.”

Twenty years ago, she thought I was too thin, so the whole conversation would have been different.

Now I take her comments in stride and say nothing, for my sake as well as for hers. It’s not worth it to react. I can’t waste my precious energy fighting her, and it’s pointless to try to change her mind. I register her criticism (she’d call it concern), and if she didn’t have dementia, I’d call her on it. But she does, so I don’t.

Still, I don’t have to sugarcoat the past. I don’t have to pretend that Mom has never annoyed me. I think it’s important to acknowledge my mom’s imperfections, not to her – heavens, no – but to myself. I can treat her with deference now, because I saw her as a real person for most of my adult life – a complex, imperfect person. A person who loved me but did not exist for me. A person in her own right. A person who had strong opinions about the right way to live . . . opinions that were sometimes different from my own.

That was then. Then, I stood up for myself. This is now. Now, I take care of myself in other ways, and let her have her say.

There are things about my mom that annoy me. But we get along.