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.

June at Little Creek 2017

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.

IMG_20140730_143526_590

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.

June Coloring, June 2017

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.

June on Medlock Path

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

 

Dementia, Fear, and Shakespeare

About eight years ago, not long after Mom had been diagnosed, I was in a production of Shakespeare’s King Lear. I was still living in fear and denial, still mentally fighting the disease. Needless to say, it wasn’t working. Quite the opposite: it was interfering with my work.

If you don’t recall the story of King Lear, it’s basically this: a powerful king is getting older, maybe a tiny bit impulsive, and decides he wants to have all the perks of being a ruler but none of the responsibilities. He’s going to divide his kingdom among his three daughters, and visit each of them in turn, letting them wine and dine him while they do the work of running the country. To determine how the kingdom will be split, he calls everybody together in a big family meeting and drops a bombshell:

Tell me, my daughters . . .
Which of you shall we say doth love us most?

Yes, you heard right. The king is giving out valuable territory and pitting his daughters against each other for the biggest parcel. Clearly this is not going to end well.

The oldest daughter, Goneril, is happy to exaggerate and flatter her father, and she’s rewarded with a large slice of the kingdom. The middle child, Regan, out-flatters her older sister and gets an equally grand inheritance. Only the youngest and most faithful daughter, Cordelia, insists on telling her father the truth: she loves him as much as she should, and she’s grateful for everything he’s done for her, but she won’t flatter him.

Lear explodes, banishing Cordelia. Then he divides the kingdom between the Goneril and Regan and stomps off in a rage. The whole family, the whole kingdom, is turned upside down. And it’s only act one. I won’t go into everything that follows, but let me assure you . . . it’s not pretty.

So.

It’s eight years ago. My caregiving journey has barely begun. I’m doing King Lear. My mother has early-stage dementia, my sister is bringing her to a matinee, and I’m playing Goneril, who is about to (a) betray her parent’s trust and (b) descend into a vicious, fatal rivalry with her sister.

I’m a nervous wreck. With my mother and sister in the audience and Mom’s dementia constantly on my mind, I struggle to concentrate, literally shaking through some scenes. The whole play seems to be about sisters and demented parents. I hear myself (as Goneril) saying to Lear what every frustrated, impatient caregiver-in-denial wants to say to a parent with dementia:

Come, sir,
I would you would make use of that good wisdom,
Whereof I know you are fraught; and put away
These dispositions, that of late transform you
From what you rightly are. . . .
I do beseech you
To understand my purposes aright:
As you are old and reverend, you should be wise.

Later I hear Regan use her father’s disease as an excuse to strip away his dignity and agency:

O, sir, you are old.
Nature in you stands on the very verge
Of her confine: you should be ruled and led
By some discretion that discerns your state
Better than you yourself.

And finally there’s our father, King Lear, at the breaking point, cursing both of us in desperation:

You heavens, give me that patience, patience I need!
You see me here, you gods, a poor old man,
As full of grief as age; wretched in both!
If it be you that stir these daughters’ hearts
Against their father, fool me not so much
To bear it tamely; touch me with noble anger,
And let not women’s weapons, water-drops,
Stain my man’s cheeks! No, you unnatural hags,
I will have such revenges on you both,
That all the world shall–I will do such things,–
What they are, yet I know not: but they shall be
The terrors of the earth. You think I’ll weep;
No, I’ll not weep:
I have full cause of weeping; but this heart
Shall break into a hundred thousand flaws,
Or ere I’ll weep. O fool, I shall go mad!

I shall go mad.

There it was: everything I feared for my mother — for myself — captured in four little words.

I made it through that performance, somehow. I’m pretty sure I skipped an important monologue. Thanks to my brilliant fellow actors, the audience still got a powerful show, but I was wrecked. Something had to give. I had to stop living in fear.

Eventually, six years later, I had enough distance and perspective to use that disaster as the basis for my first conference presentation, about how my work as an actor had in fact prepared me for caregiving. I’d like to share those thoughts with you, so I’m adapting them for the blog. I’ll put them out in sections over the next couple of weeks, while I keep working on my next presentation. (I’ll also publish info about the conference for those who are interested.)

As Shakespeare would say — more anon.

Carolyn, King Lear, 2010

A conniving Goneril in Georgia Shakespeare’s 2010 production of King Lear, with Tim McDonough and Chris Kayser. Photo by Bill DeLoach.

Fear of Dementia

When we realized that Mom had dementia, almost ten years ago, I automatically started looking for signs of it in myself. I thought about it every time I lost my keys or couldn’t remember someone’s name. I kept thinking, Alzheimer’s is hereditary; my mom has it, her mom had it; this is going to happen to me.

One morning, I started the coffee maker, did my yoga, went back to the kitchen and poured my coffee, added milk and sugar, turned off the coffee maker, put the cup on the dining room table, went to the bathroom, got dressed, then went back to the kitchen to see if the coffee was ready.

The pot was empty. What the heck? Did I forget to turn it on?

I turned it on. Nothing happened. Hmm. Did I forget to put in the water?

 I reached for the pot to fill it; it was still warm. Wait a minute . . .

I went on a reconnaissance tour. Sure enough, the cup of coffee I had no memory of pouring was sitting on the dining room table, with the spoon still in it.

Ouch.

Moments like that were scary, especially in the early days. I was grieving the mother I had known for nearly fifty years, adjusting to her diagnosis, and learning the new skills of caregiving, all while trying to raise a teenager and somehow keep a hand in my career. I’d like to say I was ready and willing to rise to the occasion, but the truth is, I wasn’t ready. Some days I wasn’t even willing. I could see years of adult freedom disappearing before my eyes; just as my child was getting ready to leave the nest, Mom was moving to an assisted living facility five minutes from my house.

Only twenty-odd years earlier, Mom had moved her mother to a nursing home and begun her daily odyssey of elder care (after years of weekly visits and endless phone calls about lost purses and stolen wallets). What if the cycle was starting again? Dementia scared me, but the thought of one day having it myself, and putting my child through what I was going through . . . that was terrifying.

Thank goodness that phase passed, somehow. Humor helped. When someone at our house was forgetful, we’d say, “Dementia is contagious!” and laugh. It took the sting out, released the tension, allowed us to breathe. Pretty soon I learned that my forgetfulness was perfectly natural, given my age and how much I was juggling. I heard someone say in a support group that dementia isn’t losing your keys, it’s finding your keys and not knowing what they’re for. That’s an exaggeration, but it makes a point: simple forgetfulness isn’t the same thing as real cognitive change.

Eventually I let go of worrying about my own potential dementia and concentrated on Mom. Which, as you probably know, was scary enough. What if she fell while we were out together? What if she “wandered off”? She treated everyone as her new best friend; what if someone took advantage of her? Which medications would help her, and which were potentially dangerous? Had we found the right assisted living? Was she getting the care she needed?

I stayed calm on the surface, but underneath, I was scared to death. What if I screwed up? Perfectionist that I was, I was afraid of letting my mother down, along with everyone who cared about her – her friends, my siblings, everyone. When I made a mistake or lost my temper, an inner voice scolded me for failing, doing it wrong, being a bad daughter when it mattered most. I worried that I was a terrible person just for being scared and indulging in all the other feelings I had about Mom’s dementia – anger, shame, frustration. How could I let myself feel those things, when Mom was the one with the disease, the one who was really “suffering”?

That was hard.

I can only write about this now because, like the first wave of fear, it passed. I don’t know exactly how; at some point I probably realized that Mom wasn’t dead yet and neither was I, so I might as well relax. Even while I was caught up in the fear, I had good days — even good weeks and months — as I got to know Mom-with-Dementia. I discovered she wasn’t so fragile. She could actually be generous and funny. I’ve written a lot of blog posts about that journey, about the happy discoveries I’ve made along the way, about the urgent need for all of us, our whole culture, to stop being afraid of people with dementia and start relating to them as human beings with plenty to offer the world.

But the fear was real, and I would be lying if I didn’t acknowledge it. Now, I want to go back and write the other parts of my dementia care journey, the things that were harder to talk about while they were happening. I have a feeling I’m not the only one who harbors emotions they’re not proud of, and maybe, if I out myself, I can help someone else feel less alone.

So that’s my mission. I’m here to say it’s okay to be scared. It’s okay to be angry. It’s okay to feel your feelings, whatever they are. We who love people with dementia don’t have to pretend it isn’t hard sometimes; of course it is. Heck, sometimes it’s hard for me to love my cat, much less my mom. And that’s okay.

We don’t have to dwell in the negative feelings. We don’t have to let them run our lives. But we are absolutely allowed to feel them.

Mom and Puppy 3, 6-2017

Would you want to let this woman down?

 

Not So Happy Holidays

It’s the Most Wonderful Time of the Year!

Unless someone in your family is living with dementia, in which case, can I pour you a drink?

Or perhaps chocolate is your drug of choice. Then let’s belly up to the chocolate bar and drown our sorrows in cocoa and whipped cream. Either way, we need to admit that this is hard.

I’ve been absent from this blog for a while, partly from an abundance of wonderful creative work, and partly from uncertainty about what to share. Mom’s dementia is advancing, and I don’t know which stories to tell, especially at Christmas.

I can write about the things that are working, which is basically a form of cheerleading combined with self-congratulation: “Look! There are things you can do with your loved ones to keep them happy! It’s not so bad after all! You don’t have to despair! See, I’m not despairing!! Aren’t I wonderful?!”

Or I can acknowledge the grief, the dull persistent ache, of realizing that she’s getting more confused, that the disease is gradually taking her in the same direction it took my grandmother — to a place of paranoia and isolation. That route saddens me so much that I quietly avoid it. I work around it. I find ways to redirect her attention to things that make us both happy: songs, games, friends, church, simple sewing projects, nature. And I ask myself, am I really handling her dementia well, or just pretending it isn’t there?

As always, I suppose the truth is somewhere in the middle. It’s true that this is the hardest time of year for her, and by extension, for me. She genuinely believes that her gifts have been stolen. She needs to be reassured, over and over, that they’re all at my house, safely wrapped and ready for Christmas day. (Leaving them at her place just confuses her.) Next week she’ll say that all the gifts she received have been stolen, and take bitter, self-righteous comfort in the belief that at least, like a good little girl, she wrote her thank-you notes.

That’s how it goes, every year now. I hate it.

Yet somehow this year, I’m doing okay. I’ve learned not to draw too much attention to Christmas. We don’t decorate her apartment anymore, because the ornaments trigger her paranoia. We do a little shopping with her and take care of the rest on our own. We visit thrift stores all year round; her favorite thing to do is to buy me “something pretty,” and she never remembers what we’ve bought. This means I can pull out a sweater she bought me weeks ago, and put it under the tree as her gift to me. She won’t know the difference. That’s sad, but somehow freeing. One more step on the path to letting go.

And it’s true that, in this season of high expectations, this season of “Joy to the World,” I sometimes lose sight of the beauty in my little corner. But it’s there.

Last Sunday we took Mom out to lunch after church. She tasted her vegetables and immediately reached for the salt shaker. She took a few bites, reached for the shaker, and salted again. And again. And again. It’s a dementia thing; her sense of taste is changing. The fourth or fifth time, I gently but firmly urged Mom not to salt her food. I told her I was sorry to be bossy, but she’d already done it twice (no need to mention the other three times), and we needed to watch her sodium.

I noticed a woman at the next table looking at me with a concerned expression. I wondered if she thought I was being cruel; why shouldn’t my mother salt her food as much as she wanted? I wondered if I was being judged.

As we were leaving the restaurant, the woman caught my eye and whispered, “Bless you.” I stopped to make sure I’d heard her right.

“Excuse me?”

“Bless you,” she said. “I’ve been there.”

And there it was. The beauty. The sense of connection. The surprising knowledge that even when I feel most alone, a stranger understands.

I’d like to wish you a Merry Christmas or a Happy Holiday, a joyous celebration of whatever brings your family around the table this time of year. But I am letting go of the need, and the obligation, to be merry and happy all the time. Instead, I’ll just offer the secular salutation of my 1960’s childhood:

Greetings of the Season. Season’s Greetings.

In this season of beauty and loss, joy and heartache, I greet you, as the woman in the restaurant greeted me. “Bless you. I’ve been there.”

You are not alone.

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