What’s Working: Self Care

(Part of a series about things that are going right in my mom’s dementia journey.)

I overslept last Friday morning. There was nowhere I had to be, so I turned off the alarm and got back under the covers, figuring I’d sleep an extra fifteen minutes or so. I woke up an hour later. I guess I should have felt guilty, but I didn’t. Thursday was a long, hard dementia day, and I needed to recover.

Rest, recovery, respite — these are necessary ingredients of good dementia care. A person with dementia can read your mental state long after they’ve stopped reading the newspaper. You want to walk into their space free of the burdens that drag you down. You have to take care of yourself — for their sake as well as your own.

Early in this dementia odyssey, I found a book at the library called Caring for Yourself While Caring for Your Aging Parents, by Claire Berman. This book was the first resource I found that acknowledged — on page one — the feelings of guilt and anger I was grappling with. Other books, like The 36-Hour Day, gave me tools for helping Mom. This book gave me tools for saving myself from the well of negative emotions that threatened to drown me.

It’s been so long since I read it that I can’t remember any specific advice from the book, so I recommend checking it out for yourself. But I can share some of the things I’ve been doing to keep myself sane.

Meaningful Work

Most self-care books recommend facials, manicures, and walks on the beach, and I am not about to argue with them. But honestly, a much higher priority for me is work. As an actor, I’m always on the verge of losing my job (if I’m lucky enough to have one) so finding new work in the theater is essential to my well-being. When I’m not acting, I try to line up work as an acting coach, teacher, or director. When those jobs aren’t available, I take lessons to hone my craft.  When all else fails, I sew, write, or threaten to renovate the kitchen. (Note to husband:  watch out, honey, I just closed a show.)

I realize that not every career doubles as self-care, but for me, working is healing. I feel like my true self when I’m making art.


I love yoga. I’m not talking about five-day retreats or even ninety-minute Bikram classes. Those would be great, but I usually only manage a daily sun salutation and a few minutes of stretching. I try to make this part of my morning routine. It takes less than five minutes, and seems to break loose the tension lurking in my muscles and joints, making it easier for me to roll with whatever life brings. Of course, there are days when I forget to do it, or tell myself I’m too busy (which is a lie, but hey, I’m only human).


Exercise of any kind helps me breathe more deeply and think more clearly. I try to set aside time for walks in my neighborhood on in a nearby park. Again, I don’t always get around to this, but when I do, everybody wins. I feel better, I’m more relaxed with Mom, and I have energy left for my family and co-workers. I’m not a big fan of going to the gym, but I know people who swear by it. My husband has been a happier person since he settled into a gym routine a couple of years ago. The calm energy he brings into the house after a workout reminds me that self-care really does serve others.

Letting it Hurt

For me, self-care includes grieving. I have to allow myself to feel the sadness of letting Mom go in this slow, protracted way. I can write about it, cry about it, or just allow my heart to ache — leave it alone and let it do its work.

Letting it Go

I know I keep coming back to this, but it’s so important:  I have to acknowledge my limits.  I can’t singlehandedly cure dementia.  My job, my privilege, is to love my mother just as she is, and simultaneously live the full life she envisioned for me. Whatever pressure I feel to overcome her dementia is pressure I am putting on myself. Life is too short for that kind of stress.

So by all means, find a form of self-care that works for you.  Get a facial, get a massage, have your nails done. Start a hobby. Listen to music. Read a good book. Run. Play with a puppy or a small child. Watch a funny movie. Hug somebody. (Definitely hug somebody.)

Whatever you do, take care of yourself.  You are not the only one who’ll benefit.


Detail from a mural on the Atlanta Beltline

What’s Working: Laughter

I have decided to write a series of blog posts called “What’s Working”, about the things that are going well in my mom’s dementia journey. It’s easy to get bogged down in the stuff that’s going wrong. Believe me, I am as susceptible as the next person to the depression and fear that go with this fun-house ride. But there are a lot of things going right in my life, and I want to share them in the hope that other people might find the joy — however unexpected — in their parents’ elder years.

I’ll start today with the biggest surprise of all: we are having fun. Mom and I crack each other up on an almost daily basis. I told my husband about this, and he didn’t quite believe me. But it’s true. Once Mom and I get past our initial conversation about how unhappy she is because people are stealing from her and denying it to her face (a fairly common dementia symptom that I listen to with complete seriousness, because to her it’s true), she is able to shift gears and enjoy our outings.

Sometimes she’ll say the funniest things, old jokes that would be pretty lame if they weren’t coming from a person with cognitive impairment. It helps that her delivery is perfect — dry, understated, with the slightest hint of mischief — and that we share a Muppet Show/Vaudeville Circuit sense of humor. The utter surprise of hearing her crack a joke after being so distraught always makes me burst out laughing, and before she knows it, she’s laughing too.

We’re pulling out of the driveway of her assisted living and deciding where to go.

Mom: What are we doing today?
Me: Well . . .
Mom: Deep subject.

We’re almost to the intersection at the end of her street and the light turns red.

Me: We missed the green light. Shoot!
Mom: Bang.

We’re at a restaurant with my husband. Mom takes a sip of water but spills some in her lap.

Me (deadpan): I think you have a drinking problem.
Mom (not missing a beat): Hic.
Me (to my husband, who is laughing): SEE WHAT I MEAN??

Yesterday at our knitting group, appropriately called the “Knit Wits”, we were talking about something having to do with the Bible. Mom was bent over her sewing (I knit, she sews), and I tapped her on the shoulder to invite her into the conversation.

Me: Hey Mom, what’s your favorite Bible verse about raising teenagers?
Mom: “It came to pass . . .”
Knit Wits: HA HA HA HA HA!

See? See why I love her? Besides all the obvious reasons (she’s my mom, she’s a generous person, she took good care of me when I was little), she’s funny.

Delight is necessary; it’s one of the things that’s missing from the lives of many elders. I want her to be delighted. I want her to laugh. The surprise is that, if I stay open her, she delights me. She makes me laugh. And that makes it possible for me to keep showing up, day after day. That is working.


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, coasterimage.com

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


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