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.

June and Terry Parkerson, Dec. 2017

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

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.

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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.

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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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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An Open Book

My husband and I hit the road recently to visit his mother, who has moved into a nursing home. She’s been in assisted living for several years, but she recently fell and broke her hip, so she needs more care.

I haven’t written about my mother-in-law, partly because her life is her own business, and partly because I’ve been focused on my own mother’s journey. But she is a piece of my dementia-care puzzle. She’s one of the many reasons I’m passionate about old people.

My “other mother” Charlotte has been part of my life since I was 13. My husband and I grew up on the same street, and one of our earliest dates was baking cookies in this woman’s kitchen.

With a degree in fashion design, Charlotte was an accomplished seamstress (her last-minute repair of the best man’s tuxedo pants saved my wedding). She was also a gifted kindergarten and first grade teacher. She could take children who seemed hopelessly lost at school and turn them into readers. Her classroom was a safe, loving place for children from all walks of life – rural farm workers, immigrants, townies – anyone who needed an education in her little corner of Georgia.

Charlotte treasured books. She taught her students to love the feel of a book in their hands, to treat books as almost sacred objects. “Don’t leave that book on the floor!” she’d cry. “Take care of it! Treat it the way you would treat your best friend!” She also adored animals of every kind, and was never without a pet.

This woman now lives with dementia. Her condition is different from my mom’s. Mom almost certainly has Alzheimer’s disease. My mother-in-law’s dementia is probably the result of multiple mini-strokes over the course of decades, one of which left her unconscious for almost twenty-four hours.

She’d like nothing more than to move back into the house she was living in when her cognitive problems began – the same house where my husband and I baked those cookies forty years ago. She’s angry that her house has been sold, angry that life has taken this bizarre turn. Why can’t she go home? Why did we sell her furniture? What have we done with her mother’s silver?

It must be so frustrating for her. It’s certainly frustrating for the people who care for her.

We recently found something that seems to lift her out of the anger for a while (besides pictures of her grandchildren, which have always helped). She still loves books, especially large photo books, the kind you put on your coffee table for a few years and wind up donating to the thrift store — National Geographic books, Life Magazine albums, art museum catalogs, old comic strip collections. And of course, books about animals.

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My husband snatches these up from libraries and thrift stores, packs them in a rolling suitcase, and takes them to the nursing home. They bring Charlotte a few moments of joy, a chance to forget her disappointments and lose herself in a good book. I don’t know how much longer she’ll be able to enjoy them – she’s very withdrawn – but for now, they provide a tiny window into a world she loves, a world where books are treasures and she is still the patient woman who taught so many children to read.

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Broadway Baby

I’m in rehearsal for a show at Atlanta’s Horizon Theatre, and I feel like the luckiest girl on the planet.  I’m working on a terrific play, with smart fellow actors and my favorite director, at a theatre with loyal subscribers and a funky, artsy vibe.  After a long dry spell of unemployment, I’m an actor again.  In fact, a few short weeks ago, I was on Broadway.

No, not that Broadway.  This Broadway:

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This Broadway is in Grand Marais, Minnesota.  My family traveled there in August to take classes at the North House Folk School, where I learned about brick-oven baking and timber framing, and my teenage daughter learned to sail.  All in one fun-filled, kayaking, hiking, biking, rock-skipping week.

Grand Marais has a long history as an arts-friendly community.  It’s located on the North Shore of Lake Superior, and the natural beauty surrounding the town is breathtaking.  No wonder so many artists travel there to paint, sculpt, build, take photographs, and write. For a town with few streets and fewer stoplights (I counted one), there’s plenty of art.  Even on Broadway:

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Sometimes, when I’m feeling artistically insecure, I deride myself for never making it to that Broadway, the big one, the real one. Or worse — for never even trying to work in New York. I tell myself I’m not really a professional, because I never endured the hardship of waiting tables in Manhattan, testing my skill and will against the hordes of other hopefuls pounding the pavement of the Great White Way.

Then I go somewhere like Grand Marais, and a simple street sign reorients me.  Suddenly I’m holding my own life-map, re-examining my choices, and realizing that the road that brought me here was my true path.

IMG_2849 I still dream of that big show, the one that starts in Atlanta and winds up in New York and proves to me — just to me, because nobody else is asking me to prove anything — that I’m a real actor.  But I know that show will never happen, unless I pursue it with all the passion and commitment I’ve poured into the life I am already living, a life that leads me to the shores of Gitche Gumee, where a stroll down Broadway with my husband and my daughter leads to the abiding rocks of Artists’ Point, and anchors me at last on solid ground.

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