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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Baggage

I have such a good relationship with Mom right now, I have to remind myself that as close as we’ve always been, we have had our share of issues.

A good relationship?  In the midst of dementia?  Well, in an odd way, yes.

Dealing with her dementia isn’t always easy or pleasant, but it has forced me to let go of a lot of baggage, and that’s good for both of us.

I’m talking about emotional baggage — the issues that inevitably crop up between parents and children, married couples, siblings. Issues like unrealistic expectations, or personality conflicts, or bad parenting, or (in my case) an almost too-perfect parent who never intended to make me feel inadequate, but who was, by her very nature, so good at everything that I sometimes felt I’d never measure up.  Poor Mom couldn’t say anything about my housekeeping or my parenting without pushing my buttons:  What did she mean by that?  Was it a veiled criticism?  Why do I care??

Very few of us get through mid-life without some baggage, so if you’re like me, when a family member shows signs of dementia you are already carrying some weight. You get on the dementia train hauling trunks and suitcases of tired old resentments, fully expecting to use them all.  Who knows when you might need to reach in and pull out a pet argument or a sensitive point?

But eventually, dementia renders all of that baggage useless.  Sure, the person with dementia may argue, but she can’t engage in the subtle tug-of-war you packed in your train case. She can’t play your little power games, at least not verbally. She can’t remember what you said five minutes ago.  She can’t even remember what she said five minutes ago.

Cognitively, she is traveling light.

At first this is infuriating.  Just when you’re old and wise enough to prove to your parents that you know exactly what you’re doing, they can’t hold onto a thought.  I remember realizing that I finally had my house the way I wanted it, the way I knew my mother would love to see it, and she had stopped caring.  Her need to feel that she had succeeded in teaching me the domestic arts was completely overrun by her need to feel safe and loved.

This is when, paradoxically, dementia becomes a gift.  After a struggle — I won’t lie, this takes time — you begin to see that all the baggage you’ve been lugging around at great expense has stopped serving you.  It’s just a burden now:  your pride, your need for approval, your righteous indignation; all are worthless in the face of pure, vulnerable human need.  You begin to unpack, to shed, to leave things behind in baggage claim. You settle in with your traveling companion. For the first time on your dementia journey, you notice the scenery, and to your surprise, some of it is lovely.

I was visiting a friend in the mountains last summer, and she told me about her father’s last years.  “I was not close to my dad,” she said, “and I had a lot of anger.  It was hard to be around him sometimes.  But once he was really deep in the dementia, I let go of all that.  He was so obviously in a different place, and there was no point in digging up the old arguments.  I just let him be who he was.”

She just let him be who he was.

Wouldn’t it be amazing if we could do that for everyone with dementia?  For everyone, period?

Sometimes I think Mom’s dementia is my teacher, helping me learn to be present, to let go of expectations, to release.  By practicing with her, maybe I can learn to travel more lightly with all my fellow humans.

I hope so.  Baggage is heavy.

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Crime Scene

I lost my temper with Mom today, but she doesn’t know it, because I’ve learned to keep these things to myself. So it can be our little secret. Okay?

Here’s how it happened.

Mom believes, every single day, that things have been stolen from her. This is a fairly typical symptom of dementia, and it long ago stopped surprising me. The good news is that most days, nothing is actually missing. She believes a basket of clean laundry has been stolen – she’s absolutely sure of this – but the basket is there in her closet, and the clothes are either in her drawers or in my dryer.

My sister and I don’t point out anymore that she’s wrong. That would be cruel. We validate her feelings: Oh, Mom, that’s awful. You must be so upset. This approach allows her to save face, and us to save our breath. Her reality is reality; there’s no point in arguing.

And when you think about it, people with dementia are experiencing loss. My insightful sister pointed out years ago that the missing laundry is a metaphor. Mom is missing something: not clothing, but something equally personal. She’s missing her sense of control, her belief that everything is in place. Parts of her brain have actually been stolen, embezzled by the firm of Plaque and Tangle, LLC.

There are days, however, when actual physical items disappear: usually her hearing aid, glasses, or room key. I keep spares of all three, because these are not things she can easily do without. After angrily denouncing the staff of her assisted living for stealing her belongings, she agrees to use the spare. And here’s the kicker: within a few days, the missing item turns up. I go to visit and see that the original hearing aid is in her ear, she’s wearing her regular glasses, or the key is in its accustomed basket on the bookcase. I do a little sleuthing to recover the back-up item, and whisk it away to my house. Mom never once says – or even realizes – that everything’s back to normal.

You see what’s happening, right? She’s hiding things. This, too, is typical of dementia. She probably puts these crucial items someplace safe, someplace where a thief won’t find them, and then loses track of them herself. Or, more infuriating, she may actually hide them in order to test us. Will we believe her when she says they’ve been stolen? Will we take her seriously? Or will we dismiss her as a crazy old woman?

I don’t believe for a minute that Mom is doing this consciously, but I think she might be doing it. As surely as a three-year-old with icing on her chin will deny eating the last cupcake, an 89-year-old with dementia will do whatever it takes to maintain her dignity. The difference is that you can teach a three-year-old that her dishonesty has consequences. The person this far into dementia can’t make that connection (though I will argue passionately that she can still do many other things well). So you have to roll with her fiction. If you want to live peacefully, there is no other choice.

A couple of days ago Mom’s key was missing. Stolen! Taken from her apartment on a basket of clean laundry! And the management refused to make her a new key! The whole spiel. Wow, I consoled, that’s awful. You must be so upset. I brought her over to my house for a truly wonderful visit: we had tea, looked at books, sang songs. When I took her home, I slipped the back-up key, on its bright, plastic-daisy ring, into the pocket of her walker, trusting that within a week or so the old key would turn up.

Sure enough, there it was today in her pocket. The missing key. The stolen property. The loot. Less than forty-eight hours after the crime.

I found the spare key and quietly slipped it into my purse. And for some reason, maybe the slight cold I’m fighting off, I lost my temper. No-one noticed; it was quick, and it all happened inside my head. But it happened. You devil, I thought. You had that key all along. Why do you do this?

There’s no answer. She does it because she has dementia. It was a good reminder of how frustrating this is, how angry I used to be all the time, how hard it must be for people who never get a break from caregiving. How important it is to step back, rest, breathe. Laugh.

Perspective is everything. Usually mine is pretty good. But some days . . . some days it gets hijacked. Stolen. Some days, my good attitude goes out on basket of clean laundry. Thank goodness it tends to show back up, exactly where I left it — if only I can remember where that is.

 

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Spring Forth

If you’ve never seen Atlanta in the spring, it looks like this:

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It’s an explosion of flowering trees, wisteria, and azaleas. The biological imperative to reproduce is on full display:  one of my daughter’s professors calls this “plant mating season”. The trees are outdoing each other for attention.  The rest of us are VIP guests at Plant World Fashion Week.

Of course there’s pollen, tons of it. Everything that isn’t covered with flowers is buried in yellow dust. And nobody can breathe.

But it’s worth it, especially if you have an 89-year-old mother with dementia. Because beauty never gets old. This time of year I don’t need to come up with any activities to do with her. All we have to do is go for a drive, and she’s happy.

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The other day we went to one of our favorite spots, a small lake with a walking trail. We used to walk around it, but now we’re content to sit on one of the swings and take in the view. We become a cheering section for joggers, a welcoming committee for parents and toddlers, and a disappointment to the ducks, who were expecting snacks.

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I’ve said this before, but it bears repeating: Mom’s dementia has forced me to slow down and notice all of this. It’s easy to take it for granted, or dismiss it as a nuisance — pollen season, ugh.

Driving through neighborhoods with her, walking oh-so-slowly to a park bench, sitting together without saying a word, I experience spring as a gift.  Every flower on these stately trees is new life from very, very old life; life that will continue long after she and I are dead; life that will remind me of her when she’s gone.  I can imagine myself in twenty years, on an spring day in Atlanta, sitting outside (on the same swing?) and remembering her.  I can already picture the sunshine, the slight nip in the air, the blossoms on the trees, and the thought in my mind:

Mother would have loved this.  

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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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