Thrill Ride

Update: Mom is still with us. In case there was any doubt.

In the roller-coaster ride of dementia care, there are times when you think you’ve lost your loved one. Every time she can’t do something she used to be able to do automatically, you think, “Oh, she’s left us.” But she rallies, or you open your mind, or both, and you realize that although she’s different now, she’s still with you.

Flashback: When I was about ten, Mom took my friend Vikki and me to Six Flags Over Georgia, a huge amusement park. It was a two-hour drive from our hometown, so every visit was a special occasion.

In those days, there was only one roller coaster in the park, the Dahlonega Mine Train, and it was my favorite ride. My friends and I were accustomed to waiting in long, snaking lines to reach the platform, where we’d be strapped into mine cars by a gaggle of teenage summer workers, their adolescent swagger and easy camaraderie adding to the excitement of venturing underground without our parents.

This summer day, miraculously, the park was not crowded, and there was no line. Vikki and I rode that roller coaster once, twice, three times . . . and each time we emerged, we dashed back to the entrance, where my mother sat waiting for us on a shaded bench.

“Can we ride it again?” we begged, breathlessly.

“If you want to,” Mom said.

Vikki and I raced through the zigzag rows of handrails to the platform, and rode the mine train 36 times – a new record, at least for us. (We couldn’t wait to get to school that fall and tell our friends.)

Looking back, I wonder at the patience my mother had, sitting on a bench in the Georgia heat, letting two little girls run and ride in circles. By that time, Mom was probably already seeing glimpses of her own mother’s dementia, the roller coaster she would soon be riding.

It occurs to me now that we may have been in Atlanta that day so that Mom could take care of her aging parents. Vikki and I rode to Atlanta several times and played, while Mom tended to her dying father and demanding mother. Maybe that trip to Six Flags happened on a weekday when Nanny needed help with shopping or the checkbook. Maybe it was the day Nanny said her purse had been stolen and Mom found it under the kitchen sink. Whatever. It was a happy day for two little girls at an amusement park.

The thing about roller coasters is this: you have to roll with them. The ups and downs and crazy turns are built in. You can fight them, or your can put your hands up in the air, let the wind whip through your hair, and accept the fact that you are not in control. You can be terrified, or you can have fun.

Or both.

I still get frightened by Mom’s dementia. I think fear and frustration are built into the ride. I will never get used to seeing her abilities slip away. I will never stop feeling a clutch in my stomach when she’s distressed; in fact, I think I’m wired to react to pain in her voice, the way new mothers physically react to their baby’s cry. And because she’s my mother, there will always be things about her that drive me a little bit crazy. But I also have fun with her. In the midst of a long uphill struggle, she can still make me laugh.

The other day, when she was feeling particularly low, I put my arms around her and hugged her tight.

“I love you, Mommy,” I said.

She hugged me back and said, “Oh darling, I love you, too. If I didn’t love you so much I’d move in with you.”

Whoosh! The sheer joy of her joke – unexpected, truthful, wise – rushed up and propelled us forward. We broke into gales of laughter, like two little girls barreling downhill on their favorite roller coaster.

Oh yes, Mom is still with us. She’s right beside me, on the ride of a lifetime.

The Dahlonega Mine Train at Six Flags over Georgia. Photo c. 2005, coasterimage.com

The Dahlonega Mine Train at Six Flags over Georgia. Photo c. 2005, coasterimage.com

 

A Long Way to Go

I’ve traveled a lot this summer: to a Buddhist Cultural Center for a retreat about dementia care; to south Alabama for quality time with a dear friend; to the mountains of North Carolina for rest and relaxation; and finally to New York City for one last family vacation celebration before my daughter goes to college. The journeys remind me, naturally, of the path I am currently traveling with my mother.

I remmber the exact moment when my caregiving journey began. I was standing in the kitchen of my mother’s old house. I’d seen a prescription medication on the counter and asked her about it. It was Prednisone, a steroid, and she told me she was taking it for severe eczema, a skin condition I didn’t know she had. I’d seen occasional red marks on her hands, but she always wore slacks and long-sleeved blouses, so her skin was mostly hidden from sight. As she sheepishly took off her blouse to show me her arms and back, I saw that large areas were red and even scabbed, where she’d scratched them until they bled.

Okay, it’s time, I thought. I have to take care of her now.

She had been to a dermatologist in Chattanooga, a half-hour drive from where she lived, and he had prescribed the steroid pills and ointment. But she was angry with that practice (“They were rude to me!”) and she was having a hard time sticking to the strict medication schedule. Both her anger at a perceived slight and her inability to take the medication on time were early signs of dementia in an otherwise active, kind-hearted, highly intelligent woman.

So the journey began.

My siblings and I developed a mantra for Mom’s journey: “As much independence as possible for as long as possible.” She lived in her house for another year or so, then spent a year in a beautiful senior living apartment in our hometown, where we hoped she’d be active but safe. My sister and I were only an hour and a half away, and all her friends were there.

I found her a dermatologist in Atlanta, and met her there when she drove down for appointments. This seemed like a win-win: she got to live independently, but I was there to keep up with her medical care and ask any questions she might forget. But the eczema never cleared up. I began to realize that until she had more help, this was going to be an issue, but that giving her more help might mean taking away her freedom before she was ready. Our win-win became a Catch-22.

One day she got lost on the way to an appointment, and though she found her way to me fairly quickly, she was rattled. I didn’t want to believe she should stop driving, but of course the writing was on the wall. I hoped she’d give up her car but stay in her apartment, where she had friends who could drive her to all her activities. But she announced that she wanted to be “closer to her girls,” and we began planning the move to Atlanta.

At that point in the journey we made a decision that has affected all of us in ways I wasn’t expecting. We chose to move Mom into assisted living, though she was physically very healthy (except for her skin). For me, it was a simple matter of logistics, combined with what I understood about good dementia care, which included a concept called “aging in place.” (This concept has come in and out of favor, but it made sense to me at the time.)

“Stay where you are as long as possible,” I told Mom, “because when you move to Atlanta you are going to assisted living. I want you in a place where you can stay for the rest of your life.” She agreed, but maddeningly insisted on the move, which I had hoped to postpone another year or so.

We chose a lovely facility with a memory-care unit (for later in the journey), and placed Mom in an apartment in the general-care section, where she could have her own bedroom, kitchenette, and living room, tastefully furnished with her favorite things from home.

But it isn’t home. She quickly started calling it “that place.”

She didn’t take to the activities, which are good, but nothing like the rich volunteer and social life she’d led with her friends. Nearly five years later, she still talks about wanting to move back to her former apartment (though never her house). When we’re on an outing and I tell her it’s time to go home, she says with a sigh, “Okay. Take me back to jail.”

And I get it. No matter how beautiful the facility, when you can’t drive and you can’t even walk out the front door alone (for your own safety, of course), you’re a prisoner. This is sad for her and frustrating for us, because we’ve become responsible for tending to Mom’s social and emotional well-being in ways we never expected. We do it gladly, but it takes a toll. It’s a rough part of the journey.

I’ll never know if we made the right decision to put her in assisted living when we did. I have a lot to say about the plusses and minuses of the current assisted living model. I believe there’s room for growth in our society’s approach to elder care, particularly emotional care, and perhaps I’ll share my thoughts on that in future posts. Of course, there’s room for growth in our society’s approach to many things – environmental issues, racism, and education come to mind, just for starters – so I don’t expect miracles overnight. But I do hope for change.

Still, with all its complexities and disappointments, assisted living has produced one genuine miracle: Mom’s eczema is almost completely gone. Now that she is on a medication schedule, and has the gentle hands of a nursing assistant to rub ointment on the occasional flare-up, Mom is free from the itching, pain, and bleeding that plagued her for longer than we knew. Thank you, Assisted Living.

So the journey goes. As I write this, I’m flying home from my last trip of the summer. I was supposed to be home yesterday, but runway problems at the airport required the plane to drop some weight, and I volunteered to be bumped to a later flight. As in dementia care, a problem also contained a blessing, as I gained time to read, think, and rest before returning to my journey with Mom.

We’re running into some turbulence on my physical flight. Mom and I will have more turbulence, too, on our metaphorical trip to her final destination. But it’s okay. My seat belt is buckled. Let’s continue the journey.

A ship on the Hudson, reminding me that journeys take many forms.

A ship on the Hudson, reminding me that journeys take many forms.

Have Camera, Will Travel

I’m back! I took some time off from blogging, but I’m ready to return to the written word. For today, however, I’m sharing pictures. I got a new phone (smart phone with camera!) and a new camera (just a camera!), and I’ve enjoyed documenting my adventures, including a retreat about dementia and two delightful excursions with my daughter. So here, in no particular order, are images from a life that seems to be always in a state of metamorphosis . . .

Box Turtle near Asheville, NC

Box Turtle near Asheville, North Carolina

Wild kitten near Asheville, trying out a new home

Wild kitten near Asheville, trying out a new home

Buddha and a buddy, Tibetan Mongolian Buddhist Cultural Center, Bloomington, Indiana

 

Ants making a home in Queen Anne's Lace, Asheville

Ants making a home in Queen Anne’s Lace, Asheville

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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If the Jeans Fit …

“Mom, there are things about you that annoy me, but we get along.”

It was a relief to hear these words from my daughter’s lips one night last week, as we stayed up late working on a project together. Truth – even unflattering truth — feels especially sweet these days.

Mothers do annoy their daughters; it’s written in stone somewhere. We help them too much or too little or in the wrong ways. We are too loving or too distant or simply too old to know what they need all the time. Our dirty little secret is that we are just people, living our own lives and falling far short of the ideal of perfect motherhood.

It’s good that my daughter and I can talk about this. She’s old enough to verbalize it, and I’m young enough to hear it. I want it to be part of our shared truth for as long as possible. Now that my mom has dementia, this is a truth I do not speak with her. I work hard not to let Mom annoy me, and not to show it when she inevitably does.

Just the other morning, as we were shuffling into Waffle House for breakfast, Mom made her usual generous offer to take me shopping. “I want to buy you some new jeans,” she said sweetly. “The ones you’re wearing are too tight.”

Wow, I thought. Thanks a lot. But I kept my thoughts to myself. “Shopping sounds like fun!” I said, heading for a booth.

Mothers shouldn’t comment on their daughters’ bodies, even – especially! – when their daughters are over fifty. We know this now, as a society, having experienced decades of eating disorders, fad diets, and ridiculous expectations. But as my sister wisely says, in Mom’s day, appearance was one of the vital things a woman had going for her, and raising attractive children was a sign of good parenting.

Mom valued a sleek form, neatly groomed. No make-up, no fancy hairstyles, no high fashion – my sister and I didn’t have to deal with any of that. We just had to be thin (but not too thin), keep our hair neat, dress attractively (but not too attractively), and have good posture.

“Stand up straight,” she told us. “Brush your hair a hundred strokes a day. And I really think you’ll feel better if you lose that little pudge.” She didn’t mean to annoy or hurt us. She was trying to help us succeed in a judgmental world. I guess she thinks she still is. She doesn’t know she’s helping too much.

If Mom had commented on my jeans ten years ago, I would have winked and said, “I like these jeans just fine, Mom, and so does my husband, so mind your own business.” Fifteen years ago, I would have bristled and said, “Mom, you are not in charge of what I wear.”

Twenty years ago, she thought I was too thin, so the whole conversation would have been different.

Now I take her comments in stride and say nothing, for my sake as well as for hers. It’s not worth it to react. I can’t waste my precious energy fighting her, and it’s pointless to try to change her mind. I register her criticism (she’d call it concern), and if she didn’t have dementia, I’d call her on it. But she does, so I don’t.

Still, I don’t have to sugarcoat the past. I don’t have to pretend that Mom has never annoyed me. I think it’s important to acknowledge my mom’s imperfections, not to her – heavens, no – but to myself. I can treat her with deference now, because I saw her as a real person for most of my adult life – a complex, imperfect person. A person who loved me but did not exist for me. A person in her own right. A person who had strong opinions about the right way to live . . . opinions that were sometimes different from my own.

That was then. Then, I stood up for myself. This is now. Now, I take care of myself in other ways, and let her have her say.

There are things about my mom that annoy me. But we get along.

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The Right Thing

I was just trying to do the right thing.

There’s been a minor flurry of media attention around Mom’s dementia in the last year, and it’s all my fault. I have been working on a new play about caregiving (Blackberry Winter by Steve Yockey, with Out of Hand Theater). The Atlanta Journal-Constitution did a story about the play. And more recently, Mom and I were featured in an article in the Alumni Bulletin of Randolph College, which we both attended.

Founded as Randolph-Macon Woman’s College, our alma mater went co-ed just a few years ago. For Mom and me, Randolph-Macon was a haven of smart, funny, gutsy women who wanted an education outside the patriarchal mainstream. Mom graduated in 1948 with a dual major in chemistry and math, and went straight to work in nuclear medicine. I graduated in 1982 with a French degree and a background in theater, and wound up with a bi-lingual acting career.

Mom (center) in her sophomore yearbook, 1946

Mom (center) in her sophomore yearbook, 1946

Randolph-Macon is one of the ties that bind Mom and me. I have a vivid memory of sitting under a tree on the verdant front lawn my freshman year, struggling with a math assignment and realizing for the first time in my life that my mother was highly intelligent. I don’t know what I had thought before; I knew she was a college math professor and had been a research chemist, but I always saw my dad as the scholar in the family. With degrees from Georgia Tech and Virginia Theological Seminary, he was a true renaissance man, a civil engineer who’d been ordained.

Mom, on the other hand, was Florence Nightingale, Suzy Homemaker, Betty Crocker, and Dr. Seuss – the loving, unassuming teller of bedtime stories and singer of lullabies who sewed all my Halloween costumes. Sure, she taught at the local community college, but so what? I imagined that she’d been handed a teaching diploma and put to work; I’d never pictured her clawing her way through a college curriculum that was now giving me serious doubts about my academic future.

I soon learned to consider my mother a Force to Be Reckoned With.

The other night I dropped by to show her my copy of the Alumni Bulletin, with its cover story and several side articles about Alzheimer’s disease, including the one about us. I’d hesitated to show it to her, because I don’t like to remind her of her own dementia. We do talk about it, but only when she brings it up; she refers to it as “memory loss”. But a couple of her classmates had written to her since reading the article, and I thought she should see it.

It’s written with compassion and sensitivity, and presents her as brave in the face of a challenging situation. It also contains quotes from me about the anxiety and frustration I felt when we first began learning to deal with this. Mom read the piece slowly, and seemed to find some parts painful, others encouraging. She didn’t like being portrayed as “demented”; she thought the focus should have been on what a good life she has in spite of her setback. I told her I thought telling our story honestly could help other people feel less alone. She smiled.

Then we opened the mail from her classmates, one of whom wrote to say she too has been diagnosed with Alzheimer’s. She was touched by Mom’s story and wanted to stay in contact. Another classmate wrote to commiserate, saying that at this point, they all have one health problem or another. Such lovely friends my mother has, after all these years.

I came home satisfied that I’d done the right thing. Until the phone started ringing.

Mom called several times that night, angry over the way she was presented, frustrated that the magazine had been mailed to my address instead of hers, generally unhappy. I tried to help her relax, but she’s going to feel whatever her mind decides to feel. All I could say was, “I’m sorry it feels that way to you, Mom. I think the article might help people deal with this experience in their own lives. I hope it will.”

The third time she called, I was ready for a scolding, but she said, “I’ve decided that if the article helps people, it’s a good thing. I just wanted you to know I’m not angry anymore.” There were no more calls that night.

Yet the next morning when I went to visit, we were back on the roller coaster: “You told them I was crazy! My classmates are sending me sympathy cards because you told them I was crazy! I’m not crazy!”

Me: I’m so sorry, Mom. It seems like I crossed a line you really didn’t want me to cross. I didn’t mean to.

Mom (calming down): I know you didn’t.

Me: What do you want to do?

Mom: I want to take you shopping and buy you something nice . . .

Did I do the right thing? Was it wrong of me to tell my mother’s story in a forum where her beloved classmates would see it? Did I betray her trust? Are these blog posts a betrayal? Is Blackberry Winter? Should I let my highly intelligent mother be remembered for the remarkable person she was, and keep my mouth shut about her final years?

I don’t know. All I know is, we’ve got a country full of baby boomers who need to talk about their parents’ cognitive issues before they start having issue of their own. We have a culture that’s terrified of cognitive decline. Many of us would (understandably) rather live in denial than build new systems of care. I think it’s high time we had this conversation. I don’t want to embarrass my mother, but I need to talk about dementia, not sweep it under the rug for the sake of polite society.

Mommy, I’m sorry if I’m letting you down. All your life you have gone out of your way to help people. Telling your story is my way of helping. I wish I could tell you that, but I think you’d rather not know. So I’ll only say this: I’m trying to follow your example, Mom. I’m just trying to do the right thing.

Mom and me at my graduation, 1982

Mom and me at my graduation, 1982

Word of the Week: With

In grade school I learned that a preposition is “anything a squirrel can do to a tree,” which doesn’t quite make sense until you consider some examples. A squirrel can go up a tree, down a tree, around a tree, from a tree, to a tree, over a tree, under a tree, etc. Get it? We had a mimeographed worksheet to illustrate this concept, with a picture of a stately tree and a mischievous little squirrel contemplating which preposition to try next.

I’m assuming anyone old enough to remember mimeographed worksheets (that smell, right?) is old enough to know someone with dementia. But even if you don’t, I invite you to consider that in this scenario, we caregivers are the squirrels and our friends with dementia are the trees. We can work around people with dementia, talk to them, do things for them, worry about them, etc. But by far the most important thing we squirrels can do is simply be with them.

In her acceptance speech at the Oscars, Julianne Moore (Best Actress, Still Alice) said of the film, in which she plays a woman with early-onset dementia:

“I’m so happy – I’m thrilled, actually – that we were able to hopefully shine a light on Alzheimer’s disease. So many people with this disease feel isolated and marginalized, and one of the wonderful things about movies is it makes us feel seen and not alone. And people with Alzheimer’s deserve to be seen, so that we can find a cure.”

Of course a cure would be lovely, but these words hold true even if a cure is never found. People – especially people with dementia – need to feel that they are not alone. There’s a reason the worst punishment in prison is solitary confinement.

Dementia patients are often cut off from their communities because their ability to contribute has changed. They can’t do what they used to do, so they miss out on the office gossip and the bowling league and the bridge club (although it’s amazing how long people retain the ability to play games they learned when they were young). We think of them as helpless, and we do things for them or to them, forgetting that the greatest pleasure is found in doing things with people. The trick is staying open to what they can still do, even if it’s as simple as holding hands.

That’s why I spend time sewing with Mom and why I take her with me to knitting and sewing groups. It’s why my sister takes her out for dinner every Friday night and to a museum or bookstore or special event every Saturday. It’s why my cousin takes Mom out for lunch and window shopping on Mondays, and why my brother and sister-in-law fly into town regularly to visit. It’s one of the main reasons I take Mom to church: so she can be with people who love her and tell her so.

Yes, these activities are stimulating, and that’s important for brain health. I recognize the value of mental engagement. I’m just saying that genuine, caring social engagement is beyond valuable: it’s indispensable.

As caregivers, we often do things for our loved ones. We pay Mom’s bills and trim her nails and make sure she receives the best medical care we can find. We drive her wherever she needs to go (and thank our lucky stars she gave up her car without a fight). Nevertheless, I will believe to my dying day that being with her is what makes her life bearable – sometimes even beautiful – as she grapples with dementia.

We are the squirrels, and she is the tree. She is the tree where we made our nest and found our food when we were small. She is the tree who gave us branches to play in and acorns to bury in the back yard. She is the tree who sheltered us when we were afraid.

Every person with dementia is someone’s tree. The least we squirrels can do is be with them.

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