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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Home, Again

Our house is a very very very fine house, but it’s sixty-six years old and in need of a little love.

I’ve been considering a renovation, but I have no experience fixing up a house. My mom and dad renovated their house after I’d gone off to college or gotten married; I don’ t remember exactly when. I’m sure I was still young, because I remember being disappointed to see the house change, and feeling a slight sense of betrayal even though it wasn’t my childhood home. They’d bought it just before my last year of high school, and since I was the last of their children, it was indisputably their house, the house they would grow old in. Still, I didn’t want it to change. I wanted it to feel like home.

Change is hard.

I’ve been planning to update my own house – specifically, my kitchen – for nearly twenty years now. I talk about it with friends, check remodeling books out of the library, click around the internet to look at designs, take pictures at friend’s houses when I see something I like. But I never do anything about it. The job just feels too huge, the cost too high, and the result too uncertain. I don’t know what I want. I feel like we’ve nested, settled in. The house feels right. A little shabby, but right.

When my daughter was little, I was gung-ho to get the work done, and I told her we were finally going to update our crappy kitchen. She said, “But Mom, I love our crappy kitchen!” And she did. For her, the pattern in the hideous burnt orange vinyl floor was an elaborate system of roads for her toy cars, or a place to make designs with spilled flour, or a stage for the drum kit she made from pots and pans and chopsticks. There was no point in fancying up a space that served her imagination so well.

This month she’ll turn eighteen. Next fall she’ll most likely be off at college. My husband and I will inhabit this house, the one we plan to grow old in. I’m ready to renovate, but I’m keenly aware that this is my daughter’s childhood home. She was conceived, nurtured, and raised in this place, and I don’t want any renovation – no matter how beautiful or badly needed – to erase the evidence of that precious time.  I want this to feel like home.

Oh well. At least now I know what I want. I’m just not sure how to get it. How do you tell a contractor to tear up your very old (but very fine) house and rebuild it so that it feels exactly the same?

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Word of the Week: Normal

Let’s talk about “normal aging.” (This is a rant. I’m just telling you up front, so you’ll know. You don’t have to agree. I just have to get it off my chest.)

Okay. The medical profession and the related care-giving professions and the Alzheimer’s Association and everybody who has anything to say about dementia draw a line between “normal aging” and “cognitive impairment”. They all provide you with handy checklists to determine whether you or your loved one might be in the early stages of dementia. Because we’re all very worried about not being normal.

“How do you know whether a forgotten name or lost set of keys is a sign of dementia, or just a part of ‘normal aging’? What kinds of cognitive changes are to be expected in everyone’s brain, and what kinds indicate disease?”

In other words, who’s normal, and who’s got bats in her belfry?

I have spent time around a lot of elderly people in the last four years, since Mom moved to an assisted living facility five minutes from my house. I have seen people with walkers, people in wheel chairs, and people who could out-walk me in a marathon. I have seen people who repeat themselves or blurt out inappropriate comments (“Nice breasts!”), and people who could give a college lecture on the spot.

I have met people with high blood pressure, diabetes, bad hips, bad knees, and bad eyes, and people with none of those conditions. I have met people with curved spines and straight backs, bald heads and flowing manes, dentures and perfect teeth.

So I ask you: if there’s that much variation in the elderly, what the hell is “normal aging”? And why isn’t dementia considered part of it?

I ‘m reading a provocative book called The Myth of Alzheimer’s that raises this very question. I haven’t finished it, but I’m intrigued. Maybe, the authors argue, it doesn’t help to think of dementia as a Big, Scary, Abnormal Disease. Maybe it actually obstructs our view of the perfectly normal person we are trying to help.

I’m not saying Alzheimer’s doesn’t impair people. Of course it does. So does arthritis. But nobody claims that the 85-year-old with arthritis is not experiencing “normal aging.” The arthritis is an obstacle, yes. It’s something to treat, something to adjust to, something to learn about. If Grandma or Grandpa has arthritis, we expect them to change. We don’t ask them to do tasks they can’t do anymore. Yet we don’t cut them out of our lives because they’re impaired. Okay, Gram can’t snap the beans for dinner or hang the laundry on the line, but she can chat with us while we order take-out and toss the clothes in the dryer. She can be part of our lives.

We make it possible for the person with arthritis to live as independently as possible. If Gramps can’t deal with shoelaces or belt buckles, we give him Velcro shoes and elastic-waist pants (good-looking ones, if it matters to him). We acknowledge his condition, but allow him his dignity. We certainly don’t consider him abnormal. But the person with dementia? That person has a Big Scary Disease.

Changes in the brain are scary; I can attest to that. When they first show up in someone you love, they can shake you to your core. But when you step back and breathe, when you look at them calmly, you can begin to see brain changes the way you see physical changes: as a part of life. We get old. We decline. We die. That’s normal, isn’t it? We are still part of the community, whatever our impaired condition. We can’t do what we once could, but we don’t deserve to be written off.

I don’t know what’s “normal” anymore. I like to think there are endless ways to grow old, just as there are endless ways to grow up. Mom is growing old with dementia. So did her mom. So might I. That’s our normal. What’s yours?

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Word of the Week: Creativity

There are times when I think my most creative work is what I do with Mom. I am not always happy about this.

I work (when I can) in a creative field – theater – and I miss the work when I don’t have a job. Acting is deeply fulfilling for me, for reasons I don’t actually understand and probably never will. I only know that I feel like I’m tapping into my deeper self, or doing what I’m supposed to be doing, or living at the intersection of my passion and the world’s need (as my sister puts it) when I am acting.

But acting jobs seldom grow on trees, and when they do, they require a great deal of care and tending. Hence, there have been long periods in the past four years when I’ve either failed to get an acting job or chosen not to seek one because I felt overwhelmed by the time and energy it would take to do a show and grapple with Mom’s dementia.

Sometimes, in those non-theatrical periods, I find myself channeling my creative energy into care-giving, as if it were an open rehearsal for a new play: focusing on my scene partner (Mom), listening to her dialogue, entering into her reality, improvising scenarios that enrich her personal drama, even dealing with props and wardrobe (the glasses, the hearing aid, the endless laundry).

Of course it’s not really a play we’re enacting. It’s real life. But it’s a life infused with the fictions her brain serves up, so it feels like a concoction of some sort. What is it that she and I are creating together?

A story, perhaps? Something like a fitting end or a final chapter to a life well-lived?

Or is our creation more like a quilt, patched together with whatever scraps of memory and humor and frustration we have on hand each day?

Or maybe a piece of music, sometimes harmonious, sometimes dissonant? Or a dance? I don’t know. I only know it helps me to think of dementia care as a creative act. Because otherwise, it’s just about getting through the day.

Again, this doesn’t always make me happy. I don’t want this to be my most creative work. I don’t want to sacrifice what I might be creating in other fields, just to live up to some self-generated ideal of perfect daughterhood. Nevertheless, her condition pushes me to think in entirely new ways about the human brain, about relationships, about inventing life in the present moment.

Dementia care is an invitation to live creatively. I wish I hadn’t been invited. But as long as I’m here . . . .

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Diva Update

Well, the recital is definitely not happening in January. I had a little setback in the form of a botched audition, and my goals are shifting. I don’t know where this will wind up, but for now, I’m taking away the pressure of performing as a singer.

For now.

I really thought I could reinvent myself as a musical theater performer, and maybe I still can. I tend to believe anything is possible if you set your mind to it. The sticking point is setting your mind. And setting it again. And again, and again. Anyway, the botched audition was a learning opportunity, and I don’t mean that in a cynical way. I’m grateful for what I learned.

It was a last-minute call to come in and sing for a show I knew very little about. I looked it up online, learned what I could, then grabbed a song I hadn’t done in more than a year, got up the next morning, did a meager warm-up, and drove to the theater.

I wasn’t nervous. I feel completely at home in a theater. I will audition for any director, anywhere, anytime, as an actor. I know exactly what I’m doing with spoken text. But when I walked into the audition room and got up in front of people I didn’t know, to sing material I hadn’t sufficiently prepared, for a show I’d never read, the bottom dropped out of my voice. Nerves or butterflies or blood-sucking parasites took over my breathing apparatus, and I sang like the amateur I apparently am.

Lesson learned: PREPARE. Sing often. Have a repertoire of songs you know you can KILL in any situation. Sing in front of people. Warm up daily. Don’t get stuck in one style (e.g. don’t spend six months on Italian arias and then try to shift into Country on a day’s notice, unless you’re a much better singer than I am). And don’t assume that because you can sing, you will be able to sing well in any situation. Don’t tempt the Muse. She’s fickle.

I gained a HUGE measure of respect for my friends who do musicals. They are brilliant. (You know who you are. If you even think I am talking about you, I am.) I gained a better sense of what it will take for me to become a singer. And, for now, I canceled my recital plans.

But all is not lost. I did sing a solo on the Sunday between Christmas and New Year, traditionally a “low” Sunday when hardly anyone comes to church. I practiced hard for that. I did everything I realized I should have done for the audition: practiced daily, worked on my weaknesses, went over my trouble spots again and again, rehearsed in the space, etc.

Even so, I was nervous. I stared at my music the whole time I was singing, even though I’d memorized the song. Isn’t that crazy? Twenty-five years in professional theater, and I couldn’t look at an audience while I sang.

I have a long way to go.

But that’s a good thing, isn’t it? Something to strive for. Something to dream about. Even if I never sing professionally, I am learning volumes. I can live with that. For now.

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Word of the Week: Anger

IMG_2901Confession time.

I remember a day about three and a half years ago, when Mom had been in Atlanta a few months and I was learning how to deal with her dementia. (I still am, but the learning curve was very steep at that point.)

I had taken her somewhere (church? dinner? a park?), and it had been a long day. I was tired. Frustrated. So was she, I suppose. As we walked from the car toward her assisted living, she started reciting with gentle resignation how sad she was about moving away from home. It was a litany I would come to know by heart:

“You girls don’t have time for me. I took my mother for a walk every day, and brought her to my house after church every week for Sunday dinner. But you don’t do those things for me. You have such busy lives . . . .”  Et cetera.

On this particular day, my sister was out of town. My brother and his wife were also traveling, and weren’t catching their phone calls. I hadn’t found a support group or counselor. I felt totally alone.

I helped Mom into her living room, and then I let her have it:

“I take you to church every Sunday, and I take you out every day! You don’t remember because you are losing your memory! But I do plenty for you, and so does my sister. Don’t you DARE say we don’t take care of you the way you took care of your mother, because we do!”

That may not be an exact quote (I don’t trust memory anymore), but that’s what I was feeling: hurt, defensive, and furious. And I made sure she knew it.

Did it help?

Oh, hell no.

Maybe it felt good to blow off steam. But Mom’s face turned ashen, and I was quickly overcome with shame and regret. She probably started to cry; I don’t remember. She was horribly upset, because she had made me angry and didn’t know what she’d done. And I was shaking like a leaf, because I’d lost my temper and accomplished nothing.

Fortunately, I was able to leave her in safe hands and go home. I reached my brother and sister within a few hours, and they talked me off the emotional ledge. They understood; they’d been there. And, amazingly, Mom and I got through it. Once I calmed down, I came up with a version of the incident we could both live with: I told her that she hadn’t done a thing to make me mad. I’d just had a bad day and needed to vent. Thanks to her dementia, she didn’t remember exactly what I’d said, only that I’d been angry. So she took the high road: 

“Well, honey, I’m your mother. Your feelings are always safe with me.”

Poof! In a little sleight-of-hand illusion called the “therapeutic lie,” Mom became the hero, and peace was restored. She’ll never know how furious I was. She’s long since forgotten the whole thing. But I haven’t. I learned a valuable lesson that day: when dealing with dementia, I’d rather be at peace than be right.

I still get angry. I may never stop being angry at the disease, at what it’s done to my mother, at the gap between what she needs and what our culture currently provides for people like her. I just try not to take my anger out on her. Like me, she’s doing her best to deal with this dementia.

Unlike me, she can’t take a break from it.