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?

 

Emotional Journey

I have a new project for the blog, and I’m putting it out here for your consideration. I don’t usually like to promise I’ll write on any particular topic; the one time I tried that, the topic petered off after a few posts, and I went back to writing whatever was on my mind at the time. This is the same experiment, version 2.0, so it may or may not work out, but I’m going to give it a try.

For the past two Septembers I have been invited to speak at the Due West United Methodist Church Caregivers Conference in Marietta, Georgia, an event organized by the extraordinary Sheila Welch. Sheila runs the church’s Caregivers’ Ministry and puts together a free, one-day conference every fall for church members and anyone from the community who’d like to attend. It’s a remarkable event, with speakers from the local and national dementia community, and I’m honored to be part of it.

The first year, I gave a talk on how my work in the theatre prepared me for caregiving. Year two, I did a rather hastily prepared talk called Playful Caregiving, about the value of games and play in a dementia relationship; that’s one I’d love to develop further at some point. This year, I’m planning to talk about the emotional side of caregiving – the roller coaster of feelings, positive and negative, that come up as we travel this path with our loved ones.

I think about this a lot and plan bits and pieces of the speech while I’m driving or working in the yard, but it’s hard to make myself sit down and write about it. I thought maybe if I committed to writing blog posts about each emotion, I could get feedback from readers and keep myself on task.

So that’s the plan. I’d like to toss down some first (okay, maybe second or third) drafts of ideas for the conference here in the blog. (I can never publish a first draft of anything; my internal editor always wants to go over the copy.) If something I write speaks to you, or if you have an idea you think I should address, please let me know in the comments.

Meanwhile, here’s a picture of Mom entertaining a visitor at her assisted living.

Emotion: Joy. Question: Who’s having more fun?

Not-So-Expert Advice

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

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

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

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

But.

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

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

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

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

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

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

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

June Sparks, Mother's Day 2018

Mother’s Day, 2018

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

Parallel Perfection

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

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

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

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

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

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

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

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

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

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

She’s not impressed with my theatre career.

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

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

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

Okay.

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

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

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

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

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

Sigh.

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

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

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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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The Lord Be With You

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

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

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

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

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

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

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

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

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

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