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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Working Girl

My last post was about the value of work for people with dementia. Today I thought I’d start sharing examples of the kinds of work my mom can still do.

Mom used to belong to a group called “Quilting for Others”, which provides warm lap quilts to homeless shelters, senior centers, and other places where there’s a need. She had to give up the group when she moved to Atlanta, but she brought boxes of quilting projects with her. I knew next to nothing about quilting, but I discovered that Mom could teach me, if I had the patience to learn.

At the time I didn’t actually want to learn quilting, and I was finding other things to do with Mom, so I gave a lot of the materials back to her group. But I recently opened a mystery box in my attic and discovered some five-year-old projects that were almost complete. The quilt tops, soft batting, and fabric backing were pinned together. The quilts only needed to be tied and bound. Maybe we could do that.

A word of explanation: Mom’s group “ties” their quilts, as opposed to “quilting” them. Tying a quilt is just what it sounds like — putting strong thread through all three layers at regular intervals, and tying square knots to keep the layers in place.

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Guess what? Mom can do this! And she loves it!

IMG_0678She has tied two quilts since I opened that box. At first I tried to plan everything out in advance and put pins where each knot should go. Bad idea; Mom has her own way of working. As soon as I let go of control (life lesson, again), she was happy.

Happy!  A person with dementia, genuinely happy!  Imagine the possiblities . . .IMG_0680

 

 

Labor of Love

As an actor, I go through regular periods of unemployment, and I always worry that I’ll never work again. Like most artists, I’m sure my last gig really was my last. Between jobs I can easily become discouraged, even depressed if I let it go that far. I try not to let it go that far; life is way too short. Still, I know what it’s like to feel useless. It’s not fun.

Fortunately, I know my life’s work isn’t over. If nobody hires me to act, I will produce a play (I’ve done that). If I can’t raise the money to produce a play, I will volunteer for a theater (I can usher). If nobody wants me to volunteer, I will memorize monologues and recite them on the subway (watch out, commuters). I will work.

But what if I couldn’t? What if there really was no job for me, and I couldn’t create one for myself? What if society didn’t want my services?

My mom has always been useful. In any situation she is ready to help, ready to serve, ready to make a difference. Before she developed dementia, she had a thriving volunteer life. Before that, she had a great marriage, a career, and three decades of child-rearing (her first child was born in 1949, and her last left for college in 1978). She used to tell me that, more than anything, she wanted to die busy.

Feeling useless is her worst nightmare. Unfortunately, she has plenty of opportunities to feel that way. She lives in assisted living, so all her meals and housekeeping are provided. She doesn’t drive (which is a good thing), so she can’t visit the sick or volunteer in nursing homes the way she used to. It’s not a good idea for her to tutor math anymore, although she’d love to do it. She needs simple projects, but her dementia makes it hard for her to plan and execute tasks on her own — things like writing a letter or organizing a photo album, the kinds of things many older adults can still do.

She has access to activities at her assisted living, but they are designed mostly to entertain, and entertainment isn’t the same as engagement.  It’s valuable, but it’s clearly not enough, at least not for her.

I was devastated when I began hearing Mom say, after just a month or so in her new home, “I feel so useless. Why am I still here? I’m just taking up space and spending your inheritance. Why don’t I just die?” I wanted to say, “Mom, don’t talk like that! Why are you being so negative?” But slowly, I began to get it. I’ve been there — not to that degree, thank God, but still . . . I know the territory.

So I said, “You’re useful to me. You’re my mommy.” And I thought, “Somebody needs to give this poor woman a job.”

Like me, like all of us, people with dementia need to be useful. They need jobs — ways to participate in the workforce for as long as possible, and then household chores, volunteer work, meaningful tasks that contribute to the community. They need to be needed. Dementia doesn’t have to stand in their way, if the rest of us are willing to rethink our response to the disease.

Thomas Carlyle said, “Work is the grand cure of all the maladies and miseries that ever beset mankind.” My mom’s dementia doesn’t have a cure. But her feelings of uselessness do.

Put that woman to work.

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Mom kneading bread dough in my messy kitchen.

What’s Working: Games, Part Two

(Part of a series about things that are going right in my mom’s dementia journey. What’s going right in your world?)

Well, I got so excited about playing games with Mom that I went online and searched for “dementia games”. Lo and behold, I found lots of links, mostly under the heading “dementia toys.”  (I mentioned this to my friend Susie, and she instantly started imagining toys that actually solve dementia, like a Magic Eight Ball that helps you find your keys. Sorry, Susie . . . not that kind of toy.)

I found some really cool things on a site called Fat Brain Toys. A few will be arriving at my house in the next week or so. I plan to try them out and report on them in future blog posts. (I have no relationship with the company.)

Meanwhile, I thought I’d share another family game that has adapted well to dementia care. It’s a math game called Mobi, which I found on another super-cool site (with which I have no relationship) called The Grommet.

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Mobi is basically Bananagrams with numbers: you make math equations in crossword form, using tiles. There are blue tiles stamped with numbers from one to twelve, and white tiles stamped with with plus, minus, multiplication, division, and equals signs. As with Quiddler (see my last post), there are fast-paced rules for game-loving adults and easier rules for kids. And then there are Whatever Rules You Want to Make Up for your friend with cognitive challenges. Because the point here is to have fun — using whatever brain function is available.

Mom and I lay out the tiles on a table and take turns making equations. I try to stay a couple of steps ahead of her, making sure she has numbers, operations, and equals signs available all the time. But mostly I just play along. I don’t really care whose turn it is. I just like to play.  To my great delight, so does she.

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Mom was a college math professor, so it’s bittersweet to watch her struggle over a simple arithmetic game. That’s the heartbreaking part of dementia — watching a bright, active person lose the skills that once seemed to define them. I am learning, though, that if you let go of expectations, the sweet far outweighs the bitter. Her old skills are not her.  She is still a complete person.  She’s not teaching math, but she’s playing with numbers, which is something that’s always brought her joy.  Isn’t that enough?

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What’s Working: Games

(Part of a series about things that are going right in my mom’s dementia journey)

When my child was little, I stumbled upon a book at a library book sale called Games for Math. It turned out to be one of a series by Peggy Kaye: Games for Reading, Games for Writing, etc. Kaye is a specialist who designs wildly creative ways to help youngsters learn.

What a treasure! I felt like I had struck gold. My child hated worksheets and practice problems but loved games. We spent many happy hours literally playing with math concepts. A decade or so later, she is studying math at Georgia Tech. Oh yes, I believe in the power of play.

I joke that I’m going to write a book called Games for Dementia. (Alternate title: Boredom: The Silent Killer). I mean, somebody should. Because even when a person can’t play by the rules of everyday life, they can still play. Just as young children’s brains develop through creative play, older adult brains can stay active well into dementia, if someone is willing to engage them.

My mom loves card games. She was an avid Bridge player for decades. I don’t play Bridge, but we like to play Battle, and my sister and cousin challenge her to games of double solitaire. Of course, Mom cheats, but nobody cares. She doesn’t know she’s cheating. She just plays by the rules as she remembers them, and her family goes along. The point is that she’s thinking, playing, strategizing — using the brain she still has. And having fun doing it.

Since she loves cards so much, I decided to try her on Quiddler, a word game one of my friends introduced me to. It has complicated rules for multiple players, but I have learned to adapt any game to a child’s (or an adult’s) level of ability.

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For Mom, I turned Quiddler into a solitaire game. We build a triangle of cards, starting with one at the top, then two on that, three below, and so on until we have seven cards across the bottom. (This is based on a game we called “Thirteens” when I was a kid, where you try to find pairs of cards that add up to 13.) We make words with any “open” cards, and when we’re stumped, we turn over a new card from the deck.

I wasn’t sure how well this would go. Mom gave up crossword puzzles a few years ago, when the clues became confusing. I was afraid a word game would be too hard for her, but she took to it right away.

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We can spread out the game on my dining room table, or throw the cards into my purse and take them along to a diner or coffee shop to play while we’re waiting for our order. Mom loves it. I’m always amazed at the words she comes up with.

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It’s fun to watch her eyes scan the table and discover a new word — often one that I haven’t noticed yet. She’s still so bright, so alive. Parts of her brain are definitely dying, but large parts remain. She can still learn a new game; she can still think. She’s losing brain cells, but retaining her wise, playful mind. There’s a lesson in that — a lesson for me, a game for her.

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What’s Working: Self Care

(Part of a series about things that are going right in my mom’s dementia journey.)

I overslept last Friday morning. There was nowhere I had to be, so I turned off the alarm and got back under the covers, figuring I’d sleep an extra fifteen minutes or so. I woke up an hour later. I guess I should have felt guilty, but I didn’t. Thursday was a long, hard dementia day, and I needed to recover.

Rest, recovery, respite — these are necessary ingredients of good dementia care. A person with dementia can read your mental state long after they’ve stopped reading the newspaper. You want to walk into their space free of the burdens that drag you down. You have to take care of yourself — for their sake as well as your own.

Early in this dementia odyssey, I found a book at the library called Caring for Yourself While Caring for Your Aging Parents, by Claire Berman. This book was the first resource I found that acknowledged — on page one — the feelings of guilt and anger I was grappling with. Other books, like The 36-Hour Day, gave me tools for helping Mom. This book gave me tools for saving myself from the well of negative emotions that threatened to drown me.

It’s been so long since I read it that I can’t remember any specific advice from the book, so I recommend checking it out for yourself. But I can share some of the things I’ve been doing to keep myself sane.

Meaningful Work

Most self-care books recommend facials, manicures, and walks on the beach, and I am not about to argue with them. But honestly, a much higher priority for me is work. As an actor, I’m always on the verge of losing my job (if I’m lucky enough to have one) so finding new work in the theater is essential to my well-being. When I’m not acting, I try to line up work as an acting coach, teacher, or director. When those jobs aren’t available, I take lessons to hone my craft.  When all else fails, I sew, write, or threaten to renovate the kitchen. (Note to husband:  watch out, honey, I just closed a show.)

I realize that not every career doubles as self-care, but for me, working is healing. I feel like my true self when I’m making art.

Yoga

I love yoga. I’m not talking about five-day retreats or even ninety-minute Bikram classes. Those would be great, but I usually only manage a daily sun salutation and a few minutes of stretching. I try to make this part of my morning routine. It takes less than five minutes, and seems to break loose the tension lurking in my muscles and joints, making it easier for me to roll with whatever life brings. Of course, there are days when I forget to do it, or tell myself I’m too busy (which is a lie, but hey, I’m only human).

Exercise

Exercise of any kind helps me breathe more deeply and think more clearly. I try to set aside time for walks in my neighborhood on in a nearby park. Again, I don’t always get around to this, but when I do, everybody wins. I feel better, I’m more relaxed with Mom, and I have energy left for my family and co-workers. I’m not a big fan of going to the gym, but I know people who swear by it. My husband has been a happier person since he settled into a gym routine a couple of years ago. The calm energy he brings into the house after a workout reminds me that self-care really does serve others.

Letting it Hurt

For me, self-care includes grieving. I have to allow myself to feel the sadness of letting Mom go in this slow, protracted way. I can write about it, cry about it, or just allow my heart to ache — leave it alone and let it do its work.

Letting it Go

I know I keep coming back to this, but it’s so important:  I have to acknowledge my limits.  I can’t singlehandedly cure dementia.  My job, my privilege, is to love my mother just as she is, and simultaneously live the full life she envisioned for me. Whatever pressure I feel to overcome her dementia is pressure I am putting on myself. Life is too short for that kind of stress.

So by all means, find a form of self-care that works for you.  Get a facial, get a massage, have your nails done. Start a hobby. Listen to music. Read a good book. Run. Play with a puppy or a small child. Watch a funny movie. Hug somebody. (Definitely hug somebody.)

Whatever you do, take care of yourself.  You are not the only one who’ll benefit.

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Detail from a mural on the Atlanta Beltline

Good Enough?

Hey, did you know that everyone makes mistakes? And that nobody’s perfect? Literally NOBODY, y’all. I keep learning this lesson, over and over and over and over and over. Specifically about myself, but it’s helpful to remember that it applies to all of us.

My dad, may he rest in peace, was a perfectionist. And when I say, “May he rest in peace,” I really mean it, because it’s hard to be at peace when you think you’re supposed to be perfect. It’s hard to admit that you’re not going to get everything right. Dad was great at so many things that I suspect he thought he had to be great at everything. He would start a new project, and then see that he wasn’t going to be able to do it perfectly, and leave it to finish later . . . and sometimes, for want of perfection, later never came.

I’m starting some projects right now. I’m not going to tell you what they are, because I’m afraid they’ll suffer the same fate as my singing recital. You know, the one I was definitely going to do in January?  If you’ll recall, I canceled it when I realized how far from perfect my singing actually was. I still plan to come back to it – to “finish it later”, if you will – but for now it’s on hold, because my standards are too high for my own good.

Kinda like Dad’s.

But Dad learned from his perfectionism, and by the time he was in his sixties, he had mellowed a good bit. He had an expression, probably from his early days in the Army Corps of Engineers, that got him through most projects: “Good enough for government work.” (Only he said “gummint work”, a reference to his beloved Pogo.)

When my daughter was born, Dad wanted to help me get over my own perfectionism and enjoy motherhood. Because he had studied psychology (along with engineering, philosophy, theology, etc.), he talked to me at some length about the writings of Donald Winnicott, who proposed the theory of the Good Enough Mother. You know what’s best for your baby, Dad told me. Perfectionism will only get in the way. Your child needs you, not some Stepford Wife version of the ideal mom.

Of course, my first thought was “Oh God, Daddy, why did you tell me that? Now I have to figure out how to be Perfectly Good Enough!” When you care, when you want to do things right, when a thing isn’t worth doing unless it’s done to perfection, it can be really hard to get out of your own way.

Despite my doubts, motherhood did create a pathway to a “good enough” mindset. Every day was a new opportunity to fall short of perfection. The baby cried and I couldn’t always comfort her. She threw up on my clothes and floor. Her needs took precedence over the housework and laundry. She would not go to sleep. She got ear infections all the time, and we had to choose between making her more comfortable with antibiotics and keeping her off of antibiotics so she wouldn’t become resistant to them. There were lots of ways for my husband and me to be good parents, but there was absolutely no way to get everything right.  We did our best and got on with it.

Good enough,” I would say to myself, at the end of a long day. And “Nobody’s perfect.” And the best phrase, the one I read in some parenting book and posted over the kitchen sink: “Nobody’s keeping score.”

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Funny how things work out. Eighteen years later, my baby has been accepted at the college of her choice, and seems perfectly (that word again!) ready to leave the nest. Her “good enough” childhood has prepared her for life in an imperfect world, just as Winnicott and my dad said it would. If ever there was a moment to celebrate success, this is it.

Yet ironically, at this time when I should be resting on my laurels and breathing a sigh of relief, I am fighting the demons of perfectionism again.

Will my new projects be successful? Will my husband and I become the happy, productive empty-nesters pictured in the AARP Bulletin? Will I ever make Real Money? Will I find new ways to use my talents as I age into the next phase of my career? Or is my best work – as a parent, as an actress, as a person – behind me? There is so much I still want to do!

I can hear my dad’s voice saying, “What are you afraid of, Carolyn? Screwing up? Because you’re going to screw up. You have to get your heart broken. You have to be willing to fail. Perfectionism will only get in the way.”

It’s the voice of experience, and I know it’s speaking the hard, honest, but ultimately liberating truth. I know that my next task is to experiment my way into the future, doing my best, but not keeping score.

I was a good enough mother. Now it’s time to relax and be a good enough me.

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