About Carolyn Cook

I’m an actress, teacher, and explorer. I’m passionate about the arts, travel, and my amazing family. I have spent my adult life seeking ways to balance rich personal relationships with a fascinating and challenging career.

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.

IMG_0673

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.

IMG_0555

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.

IMG_0516

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.

IMG_20150819_104949534

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?

IMG_20150819_104826173

 

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.

IMG_0519

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.

IMG_0565

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.

IMG_0569

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.

IMG_0570

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.

IMG_0505

Detail from a mural on the Atlanta Beltline

What’s Working: Laughter

I have decided to write a series of blog posts called “What’s Working”, about the things that are going well in my mom’s dementia journey. It’s easy to get bogged down in the stuff that’s going wrong. Believe me, I am as susceptible as the next person to the depression and fear that go with this fun-house ride. But there are a lot of things going right in my life, and I want to share them in the hope that other people might find the joy — however unexpected — in their parents’ elder years.

I’ll start today with the biggest surprise of all: we are having fun. Mom and I crack each other up on an almost daily basis. I told my husband about this, and he didn’t quite believe me. But it’s true. Once Mom and I get past our initial conversation about how unhappy she is because people are stealing from her and denying it to her face (a fairly common dementia symptom that I listen to with complete seriousness, because to her it’s true), she is able to shift gears and enjoy our outings.

Sometimes she’ll say the funniest things, old jokes that would be pretty lame if they weren’t coming from a person with cognitive impairment. It helps that her delivery is perfect — dry, understated, with the slightest hint of mischief — and that we share a Muppet Show/Vaudeville Circuit sense of humor. The utter surprise of hearing her crack a joke after being so distraught always makes me burst out laughing, and before she knows it, she’s laughing too.

We’re pulling out of the driveway of her assisted living and deciding where to go.

Mom: What are we doing today?
Me: Well . . .
Mom: Deep subject.
Both: HA HA HA HA HA!

We’re almost to the intersection at the end of her street and the light turns red.

Me: We missed the green light. Shoot!
Mom: Bang.
Both: HA HA HA HA HA!

We’re at a restaurant with my husband. Mom takes a sip of water but spills some in her lap.

Me (deadpan): I think you have a drinking problem.
Mom (not missing a beat): Hic.
Me (to my husband, who is laughing): SEE WHAT I MEAN??

Yesterday at our knitting group, appropriately called the “Knit Wits”, we were talking about something having to do with the Bible. Mom was bent over her sewing (I knit, she sews), and I tapped her on the shoulder to invite her into the conversation.

Me: Hey Mom, what’s your favorite Bible verse about raising teenagers?
Mom: “It came to pass . . .”
Knit Wits: HA HA HA HA HA!

See? See why I love her? Besides all the obvious reasons (she’s my mom, she’s a generous person, she took good care of me when I was little), she’s funny.

Delight is necessary; it’s one of the things that’s missing from the lives of many elders. I want her to be delighted. I want her to laugh. The surprise is that, if I stay open her, she delights me. She makes me laugh. And that makes it possible for me to keep showing up, day after day. That is working.

IMG_2596

The Joy of Not Knowing

I’m about to start a new acting project, and I’m scared. This is par for the course; I never start a new project without getting nervous. I always believe this will be the one that reveals, once and for all, that I don’t know what I’m doing.

Truth? I really don’t know what I’m doing. And that’s probably a good thing. Lately I’ve chosen to accept the gift of not knowing. The truest words I can find to describe how I’ve gotten to where I am are “I don’t know.”

Over the last five years, I have been involved in friendships and medical situations and even business ventures that ended differently from the way I wanted them to, the way I knew they should. I prayed weekly for three friends who had cancer, and within a year, all of them died. I struggled to find the best possible care for my mom’s dementia, and came to realize that what I wanted for her may not exist. I worked with a team of devoted volunteers to save a non-profit theater company from going under, and it closed anyway.

To my surprise, this didn’t make me want to stop praying. It didn’t make me want to give up on Mom’s care. It certainly didn’t destroy my commitment to theater. But it did all hurt. It did confuse me. It did leave me wondering, for a time, what’s the use? Where do I go from here? How can I be helpful in a world where my best efforts seem to fail?

The answer is, “I don’t know.”

I’ve always been a hard worker. Sometimes I think I work too hard. In the craft of acting, that’s called “pushing” — doing more than you need to do, so you’ll feel like you’re really making art. When a performance seems forced or strained, the actor may have the best intentions, wanting to give the audience a magnificent show. But his very brilliance can outshine the role, masking what was meant to be revealed.

This past summer I took an acting class that challenged me to simplify my own work to the point where I felt like I was doing nothing. I resisted, of course. I’ve been acting professionally for twenty-five years, and I have some habits that have served me well in that time. The instructor, Rob Mello, was asking me to strip all of them away and start fresh: in other words, to forget what I know, and trust what I don’t know.

I’ll never forget the night my resistance began to break down. It had been a difficult week with Mom, including a trip to the emergency room (she was fine, but I was shaken). I was feeling tired and defensive, and I had no energy for the night’s exercise. So I just did it, as simply as I could, and Rob said to me, “That’s it. You think you have to do so much, Carolyn, but you don’t. When you just let go and be present, it’s beautiful.”

Well, thanks.  And . . . ouch.  I mean, I’ve spent decades working hard. I thought I knew my craft. But he was right, and I’ve come to see the value in his words, far beyond the walls of an acting class:  “Let go and be present.”  They apply to relationships, to goals, to work, and — deeply — to dementia care, where being in the present moment with your loved one is the greatest gift you can give.

Someone has been posting hand-painted signs around Atlanta for several years now, a kind of folk-art graffiti written on wooden planks and nailed to telephone poles in seemingly random combinations. There’s one near my house that says “Donkey” on one plank and “Food” on the other. I don’t get it, but it’s cool. There used to be one in an area where I sometimes work; it said, “We Live on a Broken Street.” I don’t know if it’s still there, but it spoke to me.

My favorite, by far, is high up on a utility pole, next to the stop sign at the end of my mom’s street. We stop beside it every time we go from her assisted living to the shops and restaurants nearby. It’s a guidepost for me, a mantra, a reminder of how to live, how to approach each new project, including the one I’m about to start.  Maybe I don’t know what I’m doing.  Maybe I don’t have to.  Maybe, not knowing is the key.

ATT_1441854135665_IMG_20150908_111212735