Sticks and Stones . . .

When I was born my dad was in seminary, which meant he was studying Greek and Latin (and maybe a little Aramaic?) along with theology. For years, whenever I asked Dad what a word meant, he gave me the Latin root first. I rolled my eyes, but despite myself I fell hopelessly in love with language. I had a brief affair with Latin, got married to French, and begged Shakespeare to adopt me into his extended family. He did, and I became an actor.

Language introduced me to my friend Denise, a fellow bilingual performer. We both do voice-over work for an international company (Denise is fluent in Spanish and English). She and I were talking the other day about our moms, both of whom have some form of dementia. We love our moms, and hate watching them slip farther into the disease. It helps to have a friend to commiserate with.

Now, as my father would be quick to note, the word “commiserate” comes from the same Latin source as “misery.” It implies wretchedness, deep distress, and pity. We don’t use it this way most of the time, but that’s the etymology.

Do I really want to think of my mom’s condition – and my relationship with her – as misery? Do the words I use to describe her situation make a difference?

I think they do. I recently had to turn off auto-complete in my word processor, because every time I tried to type the words “hearing aid” in a post about Mom, it gave me “heartbreaking”. Believe me, when a mostly-deaf woman loses her hearing aid for the forty-seventh time, it is heartbreaking, but I don’t want my computer reminding me of that. I want to choose my words.

Life with dementia does have its share of misery and heartbreak. But so does life without dementia.

I believe that, without denying the painful truth, I can find less painful words to describe this chapter of our lives.

For instance: humor. Mom and I were singing goofy songs in the car Sunday morning on the way to church, and she started to laugh.

Mom: Crazy people!

Me: Are you calling me crazy?

Mom: Yes.

Me: Well, thank you.

Mom: You’re welcome. It’s a compliment.

We both dissolved in giggles. This is fun, dammit! This is exactly the way I want to spend time with the people I love – laughing, playing, seizing the moment. So what if I also have to spend time reassuring, comforting, and serving this woman? She’s my mother and, more important, my friend . Wouldn’t I do that for any friend?

I’ve been compiling a list of words to explore in future blog posts: words that might open conversations about life with dementia. They aren’t all happy words; I do have to acknowledge that this is hard. They are simply truthful words, ways of talking about my experience and inviting you to talk about yours, if you’re so inclined. Words like Anger. Compassion. Grief. Creativity. Fear. Companionship. Joy.

My friend Denise suggested Guilt (that’s a big one!) and Balance. Lovely choices, don’t you think? I’ll be diving into the dictionary in the coming weeks to see what I can find. I hope you’ll join me.

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Seeing with New Eyes

IMG_2892It’s been remarkably easy for me to spend time with Mom lately. Last week my sister and I took her to Dalton, Georgia, her home of forty years, and she got to visit colleagues and friends from her career as a college professor. She was her old self, chatting with people, hugging everyone she saw, basking in the comfort of familiar surroundings.

I loved seeing her in her element. Moving to Atlanta was Mom’s choice, but it came with a downside. She left a community rich in shared experiences, a community of people who knew her in her prime and who still adore her.

I don’t say this lightly. Mom had a gift for reaching out to people and helping them over life’s hurdles with grace, dignity and humor. She taught math, tutored struggling math students, led a book study group on spiritual topics, and participated meaningfully in her church. If you needed help, any kind of help, she was there for you. The local chapter of Habitat for Humanity got a street named for her, okay? She was that kind of person.

She still is that kind of person. She just has dementia, so it’s harder for her to express her generous spirit. She can’t drive to the group foster home to help teenage girls conquer math. She can’t deliver Meals on Wheels or volunteer at the Food Bank. She can’t even host a bridge club.

And she’s living far from the people who remember her most vital days. In Atlanta, she’s one of many old people who have moved here to be closer to their children. In Dalton, she’s a matriarch.

It was good to be reminded of her old self. The trip back home put a sparkle in her eye and a new vision in mine. I see more clearly that she’s still in there, despite her cognitive setbacks. Dementia can seem like a second childhood, but my mother is still an adult, loved and honored by the community she served. Nice to see you, Mom.

Writing Through Doubt

I promised myself I’d blog for seven days in a row. Though I missed my goal, I have in fact written seven blog posts in just over a week, and I feel a sense of accomplishment. Of course, there are plenty of people who blog every day, 365 days a year, but for me, a week of daily posts was enough to learn the value – and the difficulty – of disciplined writing.

I gave myself the challenge of posting every day because I was falling into one of those dark moods, where you feel like your soul’s been tossed to the bottom of a rusty bucket and kicked under the porch. I knew I had to do something, so I picked one negative voice in my head – the one that tells me I’m a failure for not blogging regularly, but comforts me with the assurance that it’s okay because I don’t really write well enough to be published anyway – and set out to prove it wrong.

Here’s what I learned: writing takes time. You have to sit down at the keyboard and open a channel from your heart to your fingertips, and then leave that channel open long enough for messages of more than 140 characters to come through. You have to be patient when those messages are garbled or slow to arrive. You have to accept all incoming messages, no matter how irrelevant, and trust that real truths will show up if you wait for them. When you have gathered enough of them on a page, you have to put them into groups and let them talk amongst themselves, until they finally sort themselves out into paragraphs and form a little community of words that’s willing to speak to a reader.

It’s been a valuable experience, this waiting for the words. It absolutely erased the self-doubt I was feeling about writing. Quality aside, I know I can at least produce writing in quantity, and that’s reassuring.

I’m going to take a break for a few days now and ponder what to write next. I hope to be back at the blog soon. In the meantime, I’ll be singing, reading, taking long walks, loving my family, and holding on to the satisfaction I feel when my soul peers out from under the porch and glimpses light again.

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Crafting Sanity

Mom and I like to make stuff.

I am convinced that sewing helps keep my mother relatively sane. As her brain slowly succumbs to dementia, her hands remain busy, stitching away on baby blankets that she will donate to charity. She feels active, creative, and useful – and she is. Handwork is good medicine.

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Making things certainly helps keep me sane. I’m not a highly skilled crafter, but I love to make little animals out of fleece and stuffing.

Once I’ve cut them out and stitched them up, Mom fills them with polyester batting. She likes to engage them in light conversation. “Would you like some stuffing in your tummy, little bear?”

“Yes, please!” I answer for them in my best squeaky-puppet voice. It’s a silly game, but we like it. We are easily amused.

Perhaps we are not entirely sane, after all.  But our hands are busy, and for a time, our hearts are light.

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Release

Today was not my best day. I went to the dentist and found out my back molars need serious work or extraction. I took my daughter to a class, and we were late because of the dentist appointment. I lost my temper over something small and felt terrible about it.

In general, not a day to record for posterity, unless posterity would like to remember that some days are hard.

So instead of writing, I went looking in my photo files for something interesting to post, and I came across a picture taken sometime last summer. It’s a shape study; I was infatuated with circles at the time. When I opened it from the thumbnail, the word in the lower left-hand corner caught my eye.

Some days are hard. But guidance is out there, if you know where to look.

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Passion

I spent most of Sunday afternoon sitting by fireplace, reading a book and ignoring my own resolution to practice singing every day until my January recital. Why?

No really, why was I avoiding doing something I knew I wanted to do?

The simple answer is that singing, at least this kind of singing, is hard. It takes discipline to study the songs and plan the breaths and train my body to support the high notes. It takes effort to tolerate my own mistakes and try again. It takes drive to schedule a practice time and stick to it. Practicing is work, and who wants to work when there’s a fire in the fireplace and a good book to read?

I want to do the recital, and I know I should practice, but I’ve never been good at doing things just because I should. I do things because I’m passionate about them. Once the passion is there, I can be incredibly disciplined, but without the passion, I’m pretty hard to motivate.

Now, I have some serious passions. I am passionate about my family. And I’m passionate about elder care. And I’m passionate about acting. So I do a lot of things that aren’t terribly exciting, like cooking dinner or trimming my mom’s fingernails or learning my lines, because I’m devoted to a larger passion.

I tell people that singing is a ‘lifelong interest’, and as a ‘useful skill for an actor’, but I haven’t ever acknowledged it as a passion. It just seems so darn selfish and frivolous. And, okay, yes: embarrassing. Sure, I love to sing, but who cares? If it’s just an ‘interest’, shouldn’t I be learning something truly useful, like knitting? At least I’d get some nice sweaters for all the time and money I’m pouring into voice lessons.

But I don’t want to knit sweaters. I can buy sweaters. I want to sing.

This is a passion.

And that’s terrifying, because what if I suck at it? What if people don’t want to hear me sing? What if singing doesn’t love me back? What if it toys with my affections, and then dumps me at the altar on recital day? I know I said I wasn’t scared, but deep down? Yeah.

It’s so much safer just to sit by the fire. Unfortunately (or fortunately?), it’s time to pay attention to the fire that’s in me.

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Lazy Sunday

(I’m trying to blog daily for seven days. This is day three.)

I wrote a blog post for today, but it turned out to be too personal and self-involved, so I didn’t post it. (You’re welcome.)

Instead, here’s the view from the living room rug, where I spent most of the day curled up with a good book.  May your Monday morning be as warm and comforting as my Sunday afternoon . . . .

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