Tag: caregiving

Daily Prompt: Time Capsule

Published on by mbcoudal5 Comments

2012 is drawing to a close (3 weeks left!). What would you put in this year’s time capsule?

collage for UMCOR
collage for UMCOR

I would put:

  • My collage art to promote UMCOR (United Methodist Committee on Relief). Am so proud! This was an early version.
  • My bike. Oh, my bike. I love my bike. Biking in NYC makes me happy.

    seen in a bike shop window in Portland
    seen in a bike shop window in Portland
  • My first (ever!) unemployment direct deposit check. Definitely mixed feelings, but overall grateful.
  • My new business cards.
  • Masks that the girls made at Art Students League. We all play roles, wear masks, make art.
  • Chris’s SAG movie pass. Going to the movies together has been a great way to connect. Due to Chris’s illness and our busy-ness, I feel we are ships passing in the night. But we’ve sat together at such amazing movies this year! Yesterday we saw Amour. Formidable! (my favorite French word!) Today we are going to see The Guilt Trip.
  • Abeach handful of sand from Siesta Key beach. The kids and I had such a restorative time hanging out at the prettiest beach in the world last spring. Great times, too, with my bro, Nicole, dad, and Marty.
  • A mosquito from the kids and my ill-fated camping trip to Fire Island.
  • Yoga mat. Because my mom still practices yoga and stands on her head.
  • Shake Shack fries. After teaching a semester of middle school creative writing, I take my kids to Shake Shack to celebrate.
  • School Swimming Pool and Van Cortlandt Park. I watch my kids play basketball, soccer, and baseball, but I spend most of my spectator time on the sidelines of the long benches of the pool or on the edges of the Van Corltandt Park track.
  • all the cousins
    all the cousins

    All of the cousins. Being with my four siblings and their kids for Thanksgiving was definitely the highlight of 2012.

  • President Barack Obama’s birth certificate. Just in case anyone, in the future, has any questions. The man is an American, all right already. Forward.

2012 was a very good year.

Related articles

Memories of Meeting Chris

Published on by mbcoudalLeave a comment

It was about 1992 and I’d recently come back from a retreat offered by Marble Collegiate Church about relationships. I realized three qualities I wanted in a partner were brilliance, creativity and financial independence. And after a few times hanging out with Chris, (thanks to a Kirk Douglas film he was in with a mutual friend), I realized Chris had those three qualities. And more. He was a good listener. I was attracted to these qualities.

He had been an English major and so had I. He was the only person ever to express an interest on the topic of my Master’s thesis – deconstructionism and psychoanalysis. English majors just generally tend to get (and love) one another. When I met Chris, he was reading Updike’s Memories of the Ford Administration. Here was a guy who loved Updike and was a good listener? Nice.

So life ensued. We married in ’95. The kids came along in ’97 and ’99. And after a bout with prostate cancer about 10 years ago, Chris was diagnosed with Parkinson’s Disease about 9 years ago.

Chris and Cat watch the trailer for the Endgame Project.

While I know many of you love Chris as an actor and an artistic colleague, and I, too, love the brilliance and the creativity, but there is another quality Chris has brought to my life which may not sound so sexy: his steadiness.

He is not literally steady, because Parkinson’s does cause his hand and arm to shake, but figuratively, he is a rock. When the kids were little, one preschool director, Holly, commented that she’d never seen a dad so involved with the kids as Chris was.

He’s a real family man. And even as the disease progress, Chris is aces as a parent. He still cooks and shops and walks the kids home from late-night parties.

And he listens well. He’s steady. And I like that.

He no longer reads Updike the way he used to, but then again, who does?

Chris is making a documentary with a buddy who also has Parkinson’s about putting on Becket’s Endgame. To see a clip of the documentary, link to: The Endgame Project.

Happy-Go-Lucky? Good enough!

Published on by mbcoudal1 Comment

In the face of worry, I stay perky and productive. Chris does too. We continue to make a contribution — at work and at home. I want, need, and hope that we all stay as positive and productive for as long as possible.

Chris’s work is very meaningful. On the heels of his success translating The Cherry Orchard Off-Broadway and directing Picasso at Lapin Agile in Florida, he is performing in a fabulous production of Taming of the Shrew. He is also making a documentary with his friend Dan about having Parkinson’s as they rehearse for one performance of Beckett’s Endgame. (Checkout The Endgame Project.) We’re going to see the trailer for the documentary on Monday night.

So when people ask me, How is Chris doing? I usually say, “He’s doing great. He’s productive and he’s positive.”

As a family, we are doing great. Or, at least, good enough. And good enough is good enough. Lots of times, we are perky and happy-go-lucky! As I’ve said before, “We get by with a little help from our friends.” And family!

And when we feel sad about having to just get by, that’s okay. We’re human after all.

Driving with Parkinson’s Disease

Published on by mbcoudal7 Comments

On the first day of vacay, just come back from the beach, sandy and relaxed, I got Chris’s phone call with the bad news.

After I drove myself and the kids to our flight out of JFK, Chris took the driver’s seat. About five minutes later, he rear-ended a car. It was on the ramp from the airport to the highway (the Long Island Expressway?). He had been fiddling with the radio and didn’t see the car stopped at the red light in front of him.

The airbags inflated. No one was hurt. Our car was totaled. Chris told me, “My driving days may be limited.”

That night after I got that call, I didn’t sleep well. It didn’t ruin my vacation. It just felt like a signpost on the unhappy road of the progress of Chris’s Parkinson’s Disease. (He’s had PD nine years now.) Parkinson’s is a steady decline.

I have not enjoyed driving with Chris for years. Lately, he could hardly drive a city block without me clutching the dashboard or pressing my foot on a phantom break. I tried to bite my tongue, but often blurted out, “Look out!”

So, when we were together in the car, I always drove, especially with the kids in the car.

This is tough stuff. But I’m glad I didn’t have to tell him, point-blank, “I think your driving sucks.” How do tell someone that? It feels terrible. Yet, it would feel even worse if there had been a serious accident and I’d have to apologize to some stranger, knowing as I did, that his driving sucked. Maybe a small fender-bender is a blessing in disguise.

When you live with someone who is chronically ill, you have to pick your battles. You have to witness a decline. And you often don’t want to speak your truth.

You have to take over the driving. Sometimes it’d be nice to doze in the passenger seat and trust that the driver’s doing just fine. That doesn’t happen when you’re married to someone with Parkinson’s. At least, it doesn’t happen for me.

He can drive other things, but he can’t drive the family car. For that matter, neither can I. Because we don’t have one any more.

Related articles
Enhanced by Zemanta

Teaching

Published on by mbcoudalLeave a comment

When you teach, you have to think. You have to look at things in new ways. I like thinking new things, but I don’t always like acting in new ways.

my class

I have been teaching more than usual lately. Last week I led a seminar on Writing Your Spiritual Autobiography at New York Theological Seminary.

In the fall, I taught a weekly creative writing class for middle school kids.

When you teach, you can’t multitask. You know, there’s no schmoozing by the water cooler or reading the paper with your feet on the desk as a teacher. You have to be on — prepared and smart.

I like that. And I like being in the zone of teaching. It’s a change. And today, I don’t necessarily think I can make any big life changes. While my marriage is hard, due to Chris’s Parkinson’s, we all still love each other. And besides that, the kids (and Chris? and I?) need stability.

And so to get out of my rut, I teach. I am grateful for the opportunities to indulge in this happy and meaningful pursuit (distraction from my real life).

My Four Directions

Published on by mbcoudalLeave a comment
Today I took a walk in the North woods.
  • East is the direction of new beginnings, a sunrise or a new friend.
  • South is for the brightest light, the way the Southern sky fills the outside world so completely that the light must tumble into your room and heart too.
  • West is the land of the sunset and of letting go.
  • North is the direction of the North Star, the unchangeable and fixed beam in a velvet black night.

Native Americans value theses four directions and offer prayers and gratitude for Mother Earth and her four directions.

To say good bye to 2011 and hello to 2012, here is my take on my four directions.

My East is my mastery with writing. In 2011 I wrote a lot. I was published in cool places and won a few nice awards. I taught some amazing people and made new friends. My writing and indulgence in creativity made every day new.

My South is, of course, my kids. They brighten every single day. And as my neighbor Ron says, “Not one of them is a shrinking violet.” They bring me so much light and laughter (and yes, tears and frustration and hard work too.) But always, they fill my life with light.

My West is the sadness around the decline in intimacy with Chris due to his Parkinson’s Disease and our differing levels of energy and engagement. This is a place of light and dark for me, and a sunset on certain dreams that we used to share.

My North is my faith in a Higher Power, not always seen but always felt in a tug towards compassion and creative living.

This post was inspired by The Circle of Wholeness: New Year’s Reflections http://dld.bz/aAZrw by Joel and Michelle Levey

What are your four directions? Your beginnings? Your light? Your sunset? Your North Star?

Married but Living Single

Published on by mbcoudal2 Comments
Christmas lights at Columbus Circle

There is a buoyancy when I have the kids to myself. I know I am not the only married person to feel this way. Lots of married friends tell me they love when their spouse travels for work. They can parent their own way — lay down the law or lighten the load.

But there’s even more relief when the chronically ill spouse is away for a few days. Around 11 pm, when I was unplugging our Christmas tree, my son asked, “Where’s Dad?” (He’d been gone since 7:30 in the morning.) “He’s playing Scrooge at a reading in a theater upstate. Will be back Monday.”

I felt guilty for feeling so happy to have my kids to myself. Mea culpa for not sugarcoating my situation and telling you that I love helping my husband pull on his shirt or tie his shoelaces.

Surely I could be more loving and patient. I am often in a rush, especially in the morning. Being married to someone with Parkinson’s Disease slows the caregiver down too. I need to shower. I need to launch myself and the kids into our day. I need to get to my desk at work with a focused mind. I would rather not remind someone to take their pills.

Last night the kids joined me at a Christmas party where we sang carols. We ate lasagna; they drank hot cider and I drank mulled wine. My burden was lightened — we were singing and sipping and chatting. And I chatted about deep things. My kids got bored. (I love when they get bored! I love giving them memories of hanging out at an adult’s party, eavesdropping and playing board games.)

My December goal — to throw and go to beaucoup des holiday parties is working out well.

worry is contagious — so is hope

Published on by mbcoudalLeave a comment

At our social media mania workshop in Albuquerque yesterday we had an awesome group — a lot of knowledge and a lot of support for each other.

Outside the San Felipe de Neri Church in Albuquerque

When Beth (Buchanan) asked for questions on post-it notes, one participant, S., wrote, “My mom cyber-stalks me…I’m scared to blog-because she’ll read it.”

After the workshop, I looked for S. but didn’t find her. I wanted to chat about her question and reassure her. Then I realized I hadn’t called my mother in a week so I called Mom to tell her how great I’m doing.

But Mom had feedback for me. She’d read my recent post on Getting Help. And I have to admit I put the phone on speaker as she spoke and pushed back my cuticles. She said, “You should get more help. The Michael J. Fox foundation will help you get care for Chris and the kids.” She is always after me to contact the Fox foundation for help.

“Mom, I think it’s true that the Fox foundation is a caring organization,” I said. “But I think their money goes into research and not into hiring home health care for people with Parkinson’s. And, as I mentioned in that blog post, I am getting help for Chris. Although, yes, it’s hard for me.” (Did that sound defensive? Um, yes, a little.)

Mom said she’d seen Michael J. Fox on Letterman or some late night show and that Fox reminded her of my husband. “He is not doing well,” she said.

Hmmmm. Here I am at this wonderful UMAC conference, wanting to brag about how great my presentation went. And I want to be worry-free (and free) from my little family for a few days and now I’m getting worried all over again. And I’m worried about worrying, because what if Mother reads this? If you do, you know I love you and I thank you for having good ideas, concern and love for me! 😉

But here’s the thing — worry is contagious and I don’t want to catch it.

The view from my hotel room. The sun was so bright, I had to look down.

I stopped writing this post this morning to think. I went out to my little patio to look at the sunrise. The sunlight blew me away. The sun is much bigger and brighter and closer in Albuquerque than in New York City. There is something valuable, beautiful and worry-free in a big bright morning sun.

I did find S. after this morning’s session. And S., Beth and I talked about the challenges (and joys?!) of having tech-savvy mothers who read our blogs, tweets or updates and then praise, worry or comment.

I vowed to Beth and S. to be a mother who does not cyberstalk her kids on social media. It may be impossible. Like my own mother, I want to protect, get help for and read them well.

Getting Help

Published on by mbcoudal1 Comment

No one does it alone. No one.

I am terrible at getting help. So bad. I would much rather be the help than the helped. Having a husband with Parkinson’s Disease, I find his ability to help is diminishing. Of course he still pitches in and cooks dinner, but the quality of his work and the time it takes to get things done is very frustrating. For me. I need help.

On the flight home from Florida, I began to compose a letter to some church friends asking for their help with my darlings while I am going to be away for a few days for a worktrip to New Mexico. But then the plane hit turbulence and I put my laptop away. I have not opened that file. A part of me felt ashamed that I needed help.

In a city and a country of rugged individualists, I felt stupid and weak for asking for parenting and family support.

However, a few recent events in my life and in the world have reminded me that human beings need one another. We are social animals who like to live and work in community. It takes a village. We all need help – coping with an ill spouse, raising children, writing a book, organizing a demonstration or running a marathon. Here are some examples:

1. Occupy Wall Street — if you demonstrate alone, you look crazy. If you demonstrate with thousands of other people, you look like you have a cause.

2. NaNoWriMo — even the loneliness of novel writing can be ameliorated by thousands of on-line and real life friends cheering one another on. Creating small daily goals adds up to big accomplishments.

3. My Daughter’s Soccer Team — it’s much more fun to celebrate a win in a group than to win alone.

This weekend I saw this performance art piece at the foot of the High Line. The women were cutting each other's hair.

4. Haircuts — they just look better when someone else does them. In the same way, you can’t set your own broken arm.

5. My Family’s Well Being — I’ve met with a former colleague who started her own eldercare business and is helping us with Chris’s caretaking and I’ve also met with a lawyer to learn about protecting our family assets. These were huge and difficult calls to make and conversations to have. There’s more work to be done, but it’s a start.

Someday I may get back to writing that letter to my church friends to see if anyone wants to watch Charlotte’s soccer game or share a meal or prod the children to homework while I’m away. But I hesitate to finish and send the letter.

What if no one can help? Then I will end up exactly where I am. And it’s not such a bad place to be.

Working Moms Love Business Travel

Published on by mbcoudalLeave a comment

At least this mom does. I love to travel for work, not having to cook, clean up, wake anyone, or remind anyone to go to bed.

I do worry about the kids. And yesterday, I got a call from the school nurse that one of my darlings was crying, feeling overwhelmed by school work, dad’s illness, and maybe, I think, missing me a little.

I thought, Dangit, I stayed away so long. (Been gone from Sat. to Thurs.) I am heading to the airport in a few minutes and once I get home, I will try to put the house back in order. And if there are tears, I can dry them. And I do feel fully restored to do the job of mothering, working, and writing after work travel.

I was at a retreat center for work, I love that I go to retreat centers, like Life Enrichment Center in Fruitland Park, Florida and next week, Stony Point, in Stony Point, New York.

I love that work travel is a retreat. And that at the back end, I got to sneak in a visit with my family in Sarasota. Life is good.