Molecules and Landscapes

When I became a mother, after a long labor and delivery, I remember feeling that the world had changed on a molecular level. Molecules that had originated inside my body now had a body of their own, outside of me. My world would never be the same.

My mother, the person from whom my first molecules came, died a few months ago — a blessing for her and a loss for the rest of us. The world has changed again.

From the day I was born, Mother was part of my physical landscape: always there (even at a distance), whether she was caring for me, I was caring for her, or we were navigating the in-between space of mutual adulthood. 

She remained part of my landscape for weeks after she died. I helped the nurses clean her body; helped lift her onto the funeral-home gurney; covered her face with the drape when it was time to roll her away. Later, I picked up her cremated remains and brought them home to rest on my mantel. I took comfort in her presence there. It was surprisingly hard for me to schedule a funeral. 

I had been ready for her to die — after a dozen or so years of dementia, she was tired, and so were her children. We had watched her fade for so long; clearly, it was time. 

I just wasn’t ready for her to be dead. 

I won’t try to describe the grief right now. Suffice it to say that it came and went of its own accord. I’m blessed and cursed with the ability to feel things deeply, so . . . there it was. Felt. Deeply. One day I called my sister Juliana in Omaha, where she was taking care of her precious new grandchild, and cried my eyes out over how hard it felt just to schedule a funeral, much less plan one.

My sister is magic. She said, “Carolyn, there is no wrong way to do this.” 

Together, we put the pieces in place. Juliana had already made a list of hymns and readings. She wrote a eulogy that perfectly captured Mother’s spirit. We talked to our brother, our children, our closest loved ones, and made a plan to come together in January and celebrate our mother’s life. 

I don’t know how you feel about funerals, but I can tell you this: Mother’s was glorious.

 After the service, we buried her in the memorial garden behind the church. The Episcopal burial allows for family and friends to shovel a bit of dirt into the grave as a way of saying goodbye, and each of us who needed that ritual took a turn. Truly she is buried; truly from dust she came and to dust she has returned. We returned her there with our own hands.

So. The landscape has changed. 

Mother was always part of my landscape. Now she is below the landscape, inside the earth, not on the surface but deep within the ground I walk on. I miss her terribly, and yet somehow, she has set me free to walk this earth without her. Not just walk — skip, leap, dance, as she did. Her remains are buried, but the molecules she gave from her body to form mine are still here — alive, breathing, weeping and laughing and filled with wonder.

A Window on Kindness

Mom is fine, thanks to a group of hardworking people I only see through a window.

Once again, I’m amazed by my mother’s resilience, and grateful for the people who support her. Her assisted living community has been in COVID lockdown for — what is it now? Almost seven months? And she’s holding up well.

We can’t go inside her building and she can’t come out, but we can sit on the front porch and visit her through the dining room window. The amazing staff bring her out of her apartment and set us up with wireless headphones and lavalier mics, and for the next thirty minutes we can play music, sing songs, look at pictures, and just enjoy each other’s company.

It’s not ideal, but it sure beats worrying about her.

Thank you, loving staff at Arbor Terrace of Decatur. Thank you, health care workers everywhere.

I see you. It may just be through a window, but I see you. And you are awesome.

How’s Mom?

When I run into people I haven’t seen in a while, after the essential greetings and a quick rundown of career and family news, they almost always ask the same question: how’s your mom? It doesn’t matter if they’ve known her for eighty years, met her once, or only read about her in this blog. They all want to know how she’s doing.

Five years, two years, even one year ago, I would have told them she’s fine. Slowly progressing in her dementia journey. Winding down physically. Using a walker instead of a cane. A bit paranoid, but not painfully so (it’s just those darned clothes that she thinks were stolen). Ready with a smile and a hug, once the paranoia clears. Basically herself — minus some memories, plus some really interesting confabulations (ask me about that!).

These days, I still say she’s fine . . . but there are changes. She’s noticeably farther down the dementia path. She’s more confused about dates and places. Occasionally she even says she feels “lost” or doesn’t quite know who she is, but when I ask her about it, she tells me she’s June, she was married to George, she taught math and chemistry, and she has three children. She can name us, too.

She still lives in a regular assisted living apartment, with lots of great care from the staff. She doesn’t have a “sitter”, and she hasn’t moved to the “memory unit” upstairs (as if dementia were just about memory . . . but that’s another blog post). She still loves to go out, eat at restaurants, and shop at thrift stores. She’s still June, just . . . June with dementia.

Those are the facts. But what’s the essence? What do I really want to say when people ask about her? Most people aren’t expecting a long answer. How do I describe her in as few words as possible? Finally it hit me: there is one word that perfectly answers the question.

She is . . . beloved.

People love my mother. They always have. I don’t know what it is about her. Well, yes I do: she’s kind, generous, funny, smart, and intuitively caring. Notice I didn’t say “sweet.” She can be sweet, but she’s also tough as nails, calling upon her three children (and a whole lot of other people) to be our best selves. During her working life, she was a strict but encouraging college professor who taught hundreds – thousands – of college students to overcome their fear of math and graduate. After she retired she led a spirituality book group at her church and volunteered six days a week for various causes. She loved to cook for people and hosted dinner parties where the food was served on fine china, but the atmosphere was utterly relaxed.

When she began to show signs of dementia, and chose to move nearer my sister and me, I worried that people wouldn’t know the “real” June, the one I knew, the pillar of her community. I thought she was starting a new chapter at a disadvantage. No-one here in Atlanta knew how amazing she was, how loving, how brilliant. How could they? Hadn’t dementia stripped her of all that?

Guess not.

It did take time, but I needn’t have worried. At first, Mom could be “difficult” if she felt she wasn’t being taken seriously. (I’d be “difficult” too, if I were sure my things were being stolen and no-one seemed to believe me.) But eventually, her new community saw through the dementia to the essence of my mother, and like everyone else, they fell in love.

For instance, there’s a young woman at Subway who draws smiley faces on Mom’s cookie order, and comes out to hug her if the store isn’t too busy. And she’s not the only one. It happens with waiters at Ted’s, residents and staff at the assisted living, and employees at Mom’s favorite thrift and consignment stores. She greets them all with a smile (she greets everyone with a smile); they feel seen and appreciated (dare I say loved?); and they love her in return.

Mom is beloved, and she will be till the day she dies. Which is not going be anytime soon, by the look of things.

If you haven’t seen me in a while, feel free to ask about her. I know what to say now.

Hospice

No, Mom isn’t dying. Not yet, and not for a long time, from what I can see. She’s gradually inching her way into what most people picture when they hear the word dementia: confusion, short-term memory loss, a shuffling gait, a more tenuous hold on what the rest of us call “reality.” But she’s not dying.

Her niece, my cousin, is dying.

Tell me: why would a 71-year-old woman – a loving, courageous, creative part of our caregiving team — be dying of cancer, while her 92-year-old aunt lives on with dementia?

Actually . . . don’t tell me. Forget I asked. I’ve come to accept that there is no grand reason for any of this. It’s just life.

The closer death gets, the more I feel its presence, the more I see how precious each day is with the people I love. I know that’s a cliché. I can’t help it. I’m not trying to be maudlin or sentimental. I’m just realizing that my time is short, and that everything I had hoped to accomplish in one lifetime may not get done. I have to choose what matters each day, do the best I can to complete it, and forgive myself when I fail.

I’m not going to cure cancer. If I could, I wouldn’t be sitting in this hospice room listening to my cousin’s labored breathing as she naps. I’m not going to revolutionize dementia care, but other people are working on that, and I do envision a better future for all of us who face cognitive decline. I’m not going to solve all the world’s problems. All I can do is my small part.

While I live, I can treat other people – and even myself (radical thought!) – with kindness. I can practice gratitude. I can pay attention to the present moment. I can admit my faults and try to overcome them, knowing that I’ll always be flawed.

I can take an honest look at my loved ones and see them for the remarkable human beings they are, every single one of them. I am beyond fortunate to share life and death, even cancer and dementia, with these people. I can choose to remind myself of that good fortune, every day.

As I was writing, a couple of paragraphs ago, my cousin woke up. I told her I was meditating on how fortunate I am. With an IV port in her hand and an oxygen tube in her nostrils, she gently laughed and said, “Atta girl!”

See the good, my friends. Life is too short — and too long — to do otherwise.

Mom and my cousin enjoying Christmas 2017. What a difference a year makes . . . 

Relentless Pursuit

When I put together my list of acting tips that apply to caregiving, I wanted to include the concept of motivation, or intention, or what Russian acting guru Stansislavsky called the “objective.” Characters in plays (like people in life) do things for a reason, and Stansislavsky chose the term “objective” for what drives a character’s actions at any given moment. He called the larger motivation for all of a character’s actions the “super-objective”, which is just a fancy name for an over-arching goal or purpose. The super-objective drives everything a character does . . . consciously or unconsciously.

Thus, the final item on my list of tips (yes, we’re wrapping up here) is:

• Relentlessly pursue your super-objective

Let’s look back at Shakespeare’s King Lear. What’s driving our tragic hero? What’s his super-objective? It might be a number of things (I’ve never played Lear), but I tend to think King Lear wants to prove that he is loved. He certainly starts out asking for proof from his daughters, and over the course of the play, he learns through bitter experience who truly loves him — and who never did.

Remember Cordelia, Lear’s youngest daughter, the faithful one? She does love her father, but her love is complex and nuanced.  When Lear asks which of his daughters loves him best, she refuses to flatter him:

Unhappy that I am, I cannot heave
My heart into my mouth: I love your majesty
According to my bond; nor more nor less.

[ . . . ] Good my lord,
You have begot me, bred me, loved me: I
Return those duties back as are right fit,
Obey you, love you, and most honor you.
Why have my sisters husbands, if they say
They love you all? Haply, when I shall wed,
That lord whose hand must take my plight shall carry
Half my love with him, half my care and duty:
Sure, I shall never marry like my sisters,
To love my father all.

Cordelia has boundaries.

She also has a super-objective. What is it?  I’ve never played her either (and I’m too old now), but I believe she’s driven by a need to love with integrity. This integrity infuriates her father and gets her banished in the first act. But Lear and Cordelia reunite later in the play, and he sees the error of his ways. Of course, this is a tragedy, so – spoiler alert – they both die. (Almost everybody dies. Sorry.)

If you look closely, you will find that every character in every play has a super-objective. Caregivers have them too, consciously or unconsciously. I find it helps to be conscious about this, so I came up one of my own.

My super-objective with Mom is to have no regrets – to carry neither guilt nor resentment with me after she dies. I don’t want to feel guilty because I didn’t give her enough of my time, and I don’t want to resent her for taking me away from other things that matter deeply to me.

That’s my goal, every day: to love her, to care for her, but also to maintain my own work life and my other relationships. This is what she modeled for me with her mother, and it’s what I want to model for my child. I make daily choices based on that super-objective – when to visit, when to take breaks, when to give myself over completely to her needs. That way, I know I’ll be able to live with myself when her dementia journey is over.

And there you have it — a simple list of tips for caregiving, gleaned from my life as an actor. I hope it helps. Adapt it as you will. Or seek your own creative path. Theatre works for me, but your path might lead you through music, poetry, painting, glass blowing, basket weaving, writing (obviously I use that too), or a host of other creative ventures.

Art goes deep. My life as a theatre artist has enriched me and kept me connected to other people throughout my mom’s dementia.  It’s allowed me to express strong emotions and acknowledge both the joys and agonies of human life. It’s given me a way to speak the truth about things that really matter, and to give some dignity to suffering.

For example . . .

As hard as it was for me to perform King Lear in front of my mother, I still love the play. I have done two productions, and I could do it again and again. It speaks powerfully about the need to care for those who are fragile, confused, or lost. There are noble characters in the play who do prevail, even though many others die.

One of those noble characters is the duke of Albany, Goneril’s husband.  When war breaks out, he takes the side of Lear, and though he can’t save the king’s life, he honors him in death.

I’ll end with his simple speech, which helps me keep my own feelings and my mom’s courage in perspective:

The weight of this sad time we must obey;
Speak what we feel, not what we ought to say.
The oldest hath borne most: we that are young
Shall never see so much, nor live so long.

Taking Breaks: Why Everyone Needs a Stage Manager

Actors, especially young ones, would gladly rehearse endless hours to make a performance beautiful or a director happy. When the work is so important to you that it feels like a calling, you’ll knock yourself out to make it good. Unfortunately, knocking ourselves out destroys our health, exhausts our spirits, and ends up being counterproductive.

Fortunately, there are stage managers to save us from ourselves.

God bless the stage manager, who keeps an eye on the clock, tells the director it’s time for a break, then utters the magic words, “Ten minutes, everyone!” Like Pavlov’s dogs, we answer on cue, “Thank you, ten!” and drop what we’re concentrating on to stretch, grab coffee, check messages, hit the restroom, whatever. We know that in exactly ten minutes the stage manager will say, “Ladies and gentlemen, we’re back!” and the work will resume.

A number of years ago (a large number; I am no longer young), I had the honor of playing Blanche du Bois in A Streetcar Named Desire. During rehearsals, I took my breaks to the next level – I literally went outside. As soon as I heard those magic words, “ten minutes,” I was out the door, down the stairs, and out in the bright summer sun. I needed those breaks for my sanity, because Blanche lives in a very dark emotional place, and I had to remind myself that (a) I’m not Blanche, and (b) despite her emotional darkness, the sun is still shining.

I also need breaks from my mother’s dementia. I need to take walks, do yoga, be alone, write in my journal, play music, see other people, and generally get on with my life.

As an actor, I was willing to give myself over to Blanche. It was a privilege to play her. As a caregiver, I’m willing to give myself over to my mom’s needs. It’s a privilege to help her through this phase of life. But that doesn’t mean I don’t need breaks. What I really need is a stage manager to remind me when it’s time to clock out. Lacking that luxury, I build respite into my calendar.

I’m part of a family team, and we’ve learned to spell each other so that noone gets burned out. My sister Juliana and I are the front line in mom’s care; our cousin Terry is the angel who swoops in once a week and takes Mom out to dinner; and my brother David and sister-in-law Andrea travel long distance on a regular basis to take over for a few days and give everyone a break.

Believe me, I know how lucky I am to be part of this extraordinary group. The credit goes to Mom for raising us well and inspiring such devotion; she really was a terrific mother. But this level of cooperation also comes from our willingness to be honest with each other about what we can handle and when we’re burning out. We all understand the need to stop and rest.

If Mom were living in one of our homes, instead of in assisted living, breaks would be even more essential. In her excellent book The Spectrum of Hope: An Optimistic and New Approach to Alzheimer’s Disease and Other Dementias, neurologist Dr. Gayatri Devi stresses the importance of downtime:

“The trick for each caregiver is to find out what makes them tick – what offers them pleasure and relaxes them, what restores them – and schedule time for it. I’m a big believer in caregivers taking not just the occasional vacation but breaks every day, so they have restorative time for themselves on a regular basis.” (The Spectrum of Hope, p. 197)

One more point about breaks, in theater and in life: they’re not just good for you — they’re necessary to the work. Acting and caregiving require intense mental and emotional energy, and that has to come from somewhere, some reservoir of calm and peace.

We don’t become better at acting or caregiving by hunkering down and trying harder. We have to let our minds wander, and I mean this in a very positive way. We need to amble down quiet paths – physically and mentally – and see where they lead. It doesn’t take much. Even a short nap or a walk in the afternoon sun can restore us.

Let’s listen to our inner stage manager. Ten minutes, everyone.

Mom out on the town with my beautiful sister-in-law, Andrea.  Photo by David Sparks. 

 

Improvisation, or The Art of Saying Yes

I keep carrying on about how acting is hard, and takes work, and is therefore just as valid as a Real Job, thank you very much. (You’d be forgiven for thinking that the lady doth protest too much. Fear of inadequacy, anyone?) Well, in my defense, it is work, and I’ll protest that to my dying day, but okay . . . acting is also a lot of fun, and it requires a sense of playfulness that most jobs don’t.

There’s a “say yes” rule built into this profession. The cardinal sin for an actor is to say, “My character wouldn’t do that.” We have to be ready to try anything within the bounds of decency and safety. (Fights and love scenes are always carefully choreographed.)

The “yes” rule means that when a director asks me to try something, I automatically say, “Great!” even if I think it’s a bad idea. The director wants Goneril and Regan to be playing checkers when King Lear asks which of his daughters loves him the most? Great! I’ll try it.

Actors can develop this sense of playfulness by learning improvisation, or improv. This is where we make up a scene on the spot, sometimes with input from the audience. One of the rules of improv is that actors always have to say or imply “yes, and” to keep the action moving forward. The “yes” acknowledges a new reality; the “and” expands on it.

Think about it. If you don’t have a script and you start improvising one, you won’t get very far with a “no.” If one actor says, “Wow, look at that downpour!” and the other says, “It’s not raining,” the scene is over. But if the second actor says, “Perfect day for a game of water polo!” or “Step into my gondola!”, then we’re going somewhere.

“Yes, and” works beautifully for caregiving, as demonstrated in this TEDMED talk by Karen Stobbe & Mondy Carter. Karen and her husband Mondy are improv actors with years of personal experience as family caregivers. I steal from their playbook all the time.

For instance, as I’ve said before, when Mom tells me her clean laundry was stolen – which she does every single day – I don’t say, “No, it wasn’t.”

Oh sure, I used to say that. I used to want to bring her back to “reality.” I used to say, “Let’s look in your closet right now.” But that doesn’t solve anything. Mom doesn’t need to be corrected, she needs to be believed. So, I use the principles of improv to meet her right where she is and agree with her truth. “Yes, and.” I do this over and over again, because like many people with dementia, she repeats herself.

Lucky for me, I’m an actor; I’m used to saying the same lines every night, six nights a week, with the same conviction I had on opening night. When Mom says, “My laundry was stolen”, I can easily say, “Oh, no!” five or six times per visit. She just needs me to jump into the scene with her, to improvise a way to feel better. Once she feels listened to, really heard and accepted, she can usually move on.

Non-actors can play, too. My brilliant sister Juliana improvised a scenario that goes like this:

Juliana: They stole your laundry? Oh no! That’s horrible.

Mom: It’s the fourth or fifth time this has happened! I don’t have anything to wear! I had to pull what I’m wearing out of the dirty clothes! We need to go shopping and replace my wardrobe!

Juliana: Yes, we do. Hang on, though . . .  a few things are in the laundry, so we can’t be sure what we still have and what we need to replace. I know! Why don’t we wait till all your clothes come back from the laundry, then do an inventory and make a shopping list?

Mom: That’s a good idea. We won’t buy me anything till we know what I need. But let’s go shopping anyway and buy you something pretty!

There you have it: problem solved, or at least postponed, which is good enough. Once Mom is shopping, she always forgets about the inventory. And don’t tell me people with dementia can’t learn new things, because Mom has learned to play this scene with very little prompting. It’s not an improv anymore; it’s a bona fide script:

Me: They stole your laundry? Oh no! That’s horrible.

Mom: It’s the fourth or fifth time this has happened! I don’t have anything to wear! I had to pull what I’m wearing out of the dirty clothes! We’ll have to go shopping and replace my wardrobe. But I’m not going to buy anything until we do an inventory and see what I really need.

Me: Okay. That makes sense.

Mom: Let’s go shopping anyway and buy you something pretty!

We’ve been playing this scene for years now, and it never gets old. (Okay, I’m a little tired of it, but it still makes Mom feel better, and that makes our visits much more pleasant.) Professional caregivers call this technique “redirection”. I call it improv. Either way, it works, as long as you stay flexible. Improv is just that – a game, an experiment, something to play with. You never know what’s going to work — which brings me back to Shakespeare and checkers.

If a director wants me to play checkers in scene one of King Lear, I might think it’s a stupid idea, but I’m obligated to try it. My job is to say yes. Who knows what I’ll discover if I’m willing to give it a shot? Maybe it won’t work and we’ll throw out the checkers . . . but maybe, someone on stage will wind up playing chess, and an elaborate chess game will become a metaphor for the play. We won’t know unless we try.

The same applies to caregiving. As my mother’s cognition changes, I need to keep an eye out for new ways to improvise a good life. It’s not always easy, but as long as she’s willing to play, I’ll keep saying yes. Yes, and . . . .

Shopping for ornaments last Christmas at a local consignment store. 

This post is part of a serious about acting and caregiving. You can find the first post here, the second here, and the third here.

Learning My Lines

“How on earth do you memorize all those lines??!”

This is one of those questions actors get all the time. Back when I was a child, we memorized poems in elementary school (do they still do that?), but as the world becomes more digitized and we don’t even have to remember phone numbers, people see memorization as some sort of magic trick.

I always answer, “That’s the easy part!” Learning lines is the bare minimum of an actor’s responsibility. But yes, it is important, and yes, we do have to learn the lines exactly as written, so it takes work.

Say I have the line, “Shall I compare thee to a summer’s day? Thou art more lovely and more temperate.” (Okay, that’s from a sonnet, not a play, but it makes a good example.)

I need to learn that line verbatim, and I need to know it so well that it will come out of my mouth even if an audience member’s cell phone rings twenty times or a stray cat walks across the stage. (Yes, both have happened to me.) In a pinch I could paraphrase and say, “Should I talk about the differences between you and hot weather?” But that doesn’t have the music of the original; it’s not poetic at all. And I definitely don’t want to say, “Shall I compare thee to . . . ummmm . . . oh heck, it’s on the tip of my tongue . . .”. No, no, no. I have to know those lines cold.

When I first started researching dementia care, learning lines was the last thing on my mind. But then I attended several workshops with Teepa Snow. They call her the “dementia whisperer” because she has so many ways to connect with people who have dementia. I learned a lot from Teepa, including brain science, communication tools, and a way of thinking about the progression of the disease that’s really positive.

I even learned some lines — simple phrases that made my life as a caregiver much easier and more rewarding. And I learned one thing I should never say again.

The line she told me to erase from my script was, “Don’t you remember?” Teepa taught us that this line is torture to a person with dementia. If my mom isn’t sure where her hearing aid is and thinks it’s been stolen, it doesn’t help to say, “Don’t you remember? You took it out and asked me to put it in my purse because the restaurant was too loud. Don’t you remember that??”

No, she doesn’t remember. She’s afraid she’s been robbed, and now I’m reminding her that something even scarier is happening: she’s losing her memory.

Instead, I learned a valuable line from Teepa’s script, a two-word sentence I need to be able to say at a moment’s notice: “I’m sorry.” I learned to say, “I’m sorry, Mom, I put your hearing aid in my purse to keep it safe after you took it out. That must have scared you to think it had been stolen! I’m so sorry. Do you want it now?” By saying “I’m sorry,” I preserve my mom’s dignity and reassure her that I care about how she feels.

At first it was hard to apologize for things I knew weren’t my fault. It felt dishonest and manipulative. But I got used to it. Ultimately, I’ve come to believe that when I tell Mom I’m sorry, I’m not being the least bit dishonest. I am sorry that she has to struggle with dementia. I am sorry that she gets confused and scared. The least I can do is try not to make it worse.

The other line I learned from Teepa is “Tell me about that.” This is one of the best sentences I have ever added to my script. When Mom says she liked it better at her old apartment, I don’t have to say, “Well, Mom, that’s too bad. You live in assisted living now. You have dementia. I wouldn’t feel safe leaving you alone in your old apartment, so you might as well get used to it here.” That might be exactly what I’m thinking, but I don’t have to say it.

Instead I say, “Tell me about that.” And she can tell me how much she liked her balcony, or how she misses having her own washer and dryer. She could be talking about the last place she lived, or an apartment she had forty years ago, or an imaginary place her brain has created. It doesn’t matter: she’s telling me what’s on her mind, and it’s important for me to remember that she still has a mind.

I like this script better than the old one. I know these lines by heart. Mom responds well to them. She feels heard, I feel relieved, and we can enjoy each other’s company a while longer.

Hanging out with Mom and my buddy Elisa

This post is part of a series. You can read part one here and part two here.

The Act of Caregiving, Part Two

(This is part of a series of posts about how working in theater prepared me for caregiving. You can find the first post here.)

Do Your Homework:

One of the things I love most about acting (besides getting to play dress-up for a living) is how much I learn. Every play teaches me something new. Of course, all that learning doesn’t happen by magic. In theater as in life, if you want to do the job right, you have to do your homework.

A few years ago I was lucky enough to work on Donald Margulies’ play, Time Stands Still. My character, Sarah, was a photojournalist grappling with wounds — both physical and psychological — from an IED explosion in Iraq.

I know my way around cameras and I’m married to a journalist, so I was okay on those fronts. But I know next to nothing about warfare. I’ve never been in the military; I don’t even like war movies. Time to hit the books. I studied war photography and watched films with graphic battle scenes. I had never wanted to take in that much violence, but I simply couldn’t do justice to the play without witnessing the blood and gore and horror of war, at least on film.

Here’s another example, from King Lear. When actor Simon Russell Beale played Lear at London’s National Theatre, he heard about a theory that Lear had Lewy Body dementia. Beale made it his business to learn more. He worked with a medical consultant to understand what might be happening in Lear’s brain and what his symptoms could be.

Research is no substitute for acting; it’s just a base, what my mother the math teacher would call a ‘necessary but insufficient’ part of the craft. I wasn’t writing an academic paper about war photography when I played Sarah; I was portraying a human being who lived in relationship with every other character in the play. But without the research, I couldn’t have done Sarah justice. Knowing what she had been through gave me a solid foundation to build on.

Research helps in caregiving as well.

When I realized that Mom was showing signs of dementia, my actor instincts kicked in and took me straight to the library. Books like The 36 Hour Day helped me understand what was happening in Mom’s brain and how to support her as the disease progressed. Since then I’ve attended conferences and found a wealth of other books and resources: Memory Bridge, the Dementia Action Alliance, Validation Therapy, Music and Memory, Person-Centered Care, the Eden Alternative, Learning to Speak Alzheimer’s. . . the list goes on and on, and the field is growing. Almost ten years after Mom’s diagnosis, I’m still learning.

I’m not researching and writing an academic paper. I’m crafting a relationship with a human being, someone I love and respect. Doing research and reading books is no substitute for spending loving time with Mom. It’s a ‘necessary but insufficient’ step in dementia care, a way to gain insight into her experience and find ways to improve my own. But I like it, and it helps me, so I do it — and I get a kick out of the notion that I’m doing homework for the very person who taught me to do homework.

I was raised by a teacher, after all.

This picture of Mom coloring reminds me of all the years she spent grading papers. She loved her students!

The Act of Caregiving

I like to say that actors are the luckiest people on earth, because we get to play for a living.

I’m not saying my profession is all fun and games. Acting takes a lot of work — learning the craft, mastering technique, using your voice and body effectively, auditioning, getting rejected over and over again, and then — if you’re lucky — getting cast, rehearsing, memorizing lines, crafting a performance, and pouring your heart out for an audience night after night.

This work takes focus, energy, and a willingness to live in the moment. It’s similar to sports or music — you can prepare and practice for years (and you’d better, if you want to be any good), but when you’re in the middle of a performance, you have to turn loose and play. Nothing matters but what’s happening right now. You’re prepared, yet flexible; grounded, yet utterly spontaneous.

Actors never forget how to play. Even as adults, we hold onto our childhood ability to pretend, explore, and experiment. We embrace the full range of human emotions. We don’t judge the characters we play, we relish them — the villains as much as the heroes, the clowns as much as the tragic victims. Our job is to step into someone else’s reality and behave as if it were our own. We imagine what it’s like to live in another person’s skin, to deal with their frustrations and celebrate their joys. We learn to give ourselves over to their truth, while never completely losing sight of our own.

Does that remind you of anything? Maybe dementia caregiving?

If you’re a caregiver, I don’t have to tell you it’s not all fun and games. It’s a lot of hard work — learning about the health care system, dealing with doctor’s appointments and hospital stays, taking care of a loved one’s physical health, struggling to understand their cognitive and emotional needs, feeling rejected over and over again, and pouring your heart out day after day. That’s work.

But I’ll bet most caregivers have a story to tell about a time when caregiving was fun and creative, even playful – when they’ve been able to let go of grown-up concerns and just embrace the joy of being with another human being. As caregivers, we try hard not to judge the people in our care. It’s not always easy, but we try to love them — the villains as much as the heroes, the clowns as much as the tragic victims. We try to step into their reality and respond to it as if it were our own.

Does that remind you of anything? Yeah, I thought so.

I didn’t see the parallels between acting and caregiving at first, but I realize now that being an actor gave me a natural head start on Mom’s dementia journey. I made myself a list of rules for acting that I think apply to caregiving. I’ll elaborate on one today, and the others in future posts, but here’s the whole list if you’re curious:

• Acknowledge the Given Circumstances
• Do Your Homework
• Learn Your Lines
• Improvise
• Take Breaks
• Relentlessly Pursue Your Super-Objective

Acknowledge the Given Circumstances

The famous Russian acting teacher Konstantin Stanislavski taught his students to look, first and foremost, at the given circumstances of any play. These are the facts that the playwright has given us to work with: location, century, time of year, time of day, economic, political, and social condition of the characters, etc. An actor ignores these given circumstances at his own risk.

Take Shakespeare’s King Lear, for example. The setting is a royal court. The characters are rich and of high rank. The title character, Lear, is old and tired of governing. He has three grown daughters, two of whom are married to rival lords. The third is being courted by a duke and a king. Lear gathers them all together and announces a plan to divide his kingdom. Stakes are high, because power is on the line.

The actor playing Lear can’t suddenly decide to portray a young, virile commoner without a care in the world. He can’t pretend away the trappings of rank or the ravages of age. He must deal with the circumstances Shakespeare provides. Lear’s wealth, power, rank, age, and emotional unpredictability are essential to the story.

If I’m in a production of Lear (or any other play), I need to deal with the facts on the page. I want to deal with them; they’re going to inform every decision I make about how to move forward.

Same goes for caregiving.

Caregivers need to grapple with given circumstances – lots of them. Who am I caring for? How old is this person? What’s her diagnosis? If she’s 85 and diagnosed with mid-stage dementia, it does me no good to treat her as if she’s 70 and has no symptoms. That’s called denial. If, like my mother, she’s always loved to sew, had a rich volunteer life, played classical violin and hated Bingo, it does me no good to invite her to sporting events and Bingo games. I need to work with the person in front of me, not my idea of who that person is supposed to be.

Then there’s location. Where does my caregiving happen? Act one of my mother’s dementia drama was set in our family home. In act two, she moved to an independent senior-living apartment. Now we’re in act three, which takes place in assisted living. Do I wish she could have grown old and died at home? Absolutely. I know that’s what she wanted. But wishing won’t change the circumstances we’re in now, so I need to understand how her assisted living works and learn to navigate their system.

I also need to be realistic about my own given circumstances. Do I have a job or serious volunteer commitments? Do I still have a child at home? (When Mom moved to assisted living near me, the answer was yes, and my kid’s needs mattered just as much as hers.) Are there things about my mom that get on my nerves? (I plead the fifth!) I can’t ignore my own reality any more than I can avoid my mother’s. It’s not possible for me to suddenly become a saintly, full-time caregiver and still keep up my other obligations. How can I find a balance?

Accepting given circumstances and facing reality can be hard. You have to let go of what used to be true: My mom was so smart, such a good teacher, such a positive person! Why did she have to change? You go through a very understandable period of grief and anger. But even while you’re grieving, it helps to pay attention to given circumstances. Stanislavsky advises actors to write them down and refer to them through the whole rehearsal process. Caregivers can do that too.

When I faced up to Mom’s situation, when I stepped out of denial and acknowledged our new reality, I was able to see a way forward. I realized that her cognitive abilities may have changed, but her soul hasn’t. Armed with that knowledge, I can tackle my caregiving role with more confidence and help her live a more meaningful, less frightening life, right now.

No matter what the circumstances may become.

Mom’s world is different now, but still beautiful.