Tag: caregiving

The Sunset and Away From Her

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After I walked the labyrinth, I watched the sunset.

I am at the Life Enrichment Center in Fruitland Park, Florida, covering a missionary event.

After the labyrinth and the sunset, I hung out in my retreat room and watched Away From Her, a movie with Julie Christie who is awesome as Fiona — so great-looking, especially when cross-country skiing and going crazy!

You can tell that Fiona’s Alzheimer’s is getting worse by the way her hair gets messier. Her husband, Grant, played by Gordon Pinsent, also has way too much hair for an older person. He is unbelievably devoted. Not to ruin the plot for you, but Grant, the caregiving spouse, has a passionate moment with another caregiving spouse, Marian, played by the fabulous Olympia Dukakis.

You can see their happiness in this brief encounter — the sheer ecstasy. This encounter supports Pat Robertson’s advice  — to love your spouse, to get good care for your spouse and then divorce your divorce. I never thought I’d defend Pat Robertson, but after seeing Away From Her, I can understand where he’s coming from. Go for it, Marian and Grant!

But then there is my life, which is not a movie. As a caregiver of a spouse with Parkinson’s Disease, I feel, at times, very lonely and too hard-working. Of course, I am loving, supportive and grateful for my husband’s contribution and creativity. More than anything, I appreciate the way he lovingly parents our kids.

Unlike Fiona and Grant, we do not have great hair. We do not cross country ski. We work; we parent; we lose patience; we laugh; we cry; we take out the garbage. Our lives do not fit into a neat movie plot; it does not always make good sense. So to figure it all out, I love to travel for work, watch the sun set and walk the labyrinth.

Doubles with People with Parkinson’s

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My nephew, YC, and I played doubles with my husband, C, and his brother, J, who both have Parkinson’s Disease. In their day, the brothers had killer shots. But on this summer sunny Sunday morning, it wasn’t their shots that failed, it was their legs.

J was my partner. He fell several times. Even though he landed face first on the clay court, he usually returned the volley within our opponent’s white lines.

“I’m fine. I’m fine,” J said as he struggled to stand. “Keep playing.”

“The point’s over. We won,” I said. He and C’s shots were still, many times, unreturnable.

I glanced across the net at YC, who is about to be a college Senior. We smiled at each other, asking with our knit eyebrows, “Should we keep playing? Is this crazy?”

Just last summer when playing one of these tennis games with my husband, he fell and we landed in the ER. He had dislocated his pinkie.

from creative commons. Tennis balls on a clay court.

That day, C had said to me, “Just pull my finger. It’ll be fine. Then we can keep playing.”

“No, I won’t,” I said. I have my limits and apparently relocating a dislocated pinkie is one of them.

So I knew that tennis with a Parkinson’s partner was fraught with possible negative consequences. But this summer morning we played on. My nephew and I continued smiling, almost laughing, sympathizing with one another. We were trying to take our cue from each other. But neither of us wanted to call off the game. We all wanted to keep playing, to stay competitive, to win.

Fortunately, I had to shower before Sunday chapel service. We didn’t play much longer. There were no serious injuries; although there were minor ones, like scraped knees.

While the people with Parkinson’s may believe they’re “fine, fine, keep playing,” those around them may wonder if that is true or wise.

If you ever do play mixed doubles with two brothers who have Parkinson’s Disease, I advice you to smile a lot. Even laugh. Because life is ridiculous. And everyone wants to keep playing for as long as possible.

Teaching Children Responsibility

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Six years ago, I borrowed a book from my daughters’ preschool. The book was called Teaching Your Children Responsibility. I don’t remember any advice from the book. All I know is that I never returned the book to the preschool lending library.

I have felt guilty about not returning that book for six years. I try to model responsibility and consistency. Sometimes I model guilt and blame.

For the mess in our apartment I like to blame my husband Chris and his Parkinson’s Disease and my children who have no good excuse. And of course I blame myself because I don’t discipline them enough and I would rather write before work and play tennis after work than clean and do laundry. I would rather go out to Happy Hour with my work peeps than make a family dinner. How often have I said, “Let’s order Chinese food again, kids”?

I may be irresponsible but I am happy. I may be guilty but I am keeping the Cottage, the best Chinese restaurant on the Upper West Side in business.

I may be messy, but I am creative. This is what I tell myself. In our country house there is a magnet on the fridge. It says, “A creative mind is seldom tidy.” So true.

This jibes with my Rule Number 5: Expect the best, love what you get. Even from yourself.

Someday I’ll return that library book. Until then, I’ll try loving myself.

Getting Kids to Help

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I really yelled at the kids.

“I am working all day, then I come home and I work all night.” I was trapped in the kitchen, lonely, scrubbing pots and pans, loading dishes into the dishwasher. Chris had used every cooking utensil we own to prepare a fancy dinner for a neighbor who’d just come home from surgery.

It was probably the most beautiful night in the history of beautiful nights and I was Cinderella. I’d have preferred eating a PB&J in the park, wiggling my toes in the long summer grass.

I have a Cinderella complex, love to feel martyr-ed and uninvited to the party. But remember Cinderella did get one free night. And on that night, she partied hard. That could be me.

I know I should insist that my kids help. A friend in a caregivers support group said that in looking back at her kids’ childhoods, she regretted doing everything for them — like me, she did so much for her kids because she felt sorry for them and for the fact that their dad had a chronic illness. I don’t want that regret.

Yes, in the school year, I do more for the kids because they have homework or they’re tired. But right now, they’re all out of school. “And kids, Mommy’s tired too.”  It’s true I love my job, but it can be tiring. I wish I lived in the 1950s where the breadwinner comes home, puts his feet on the ottoman, reads the paper and drinks a high ball. Maybe I’ll do that when the kids go to camp. ‘Cause I want to be lazy too.

Until then, I will keep crossing off items from my summer bucket list.

  1. Hold a baby
  2. Go to the IWWG (International Women’s Writing Guild) conference at Yale http://www.iwwg.org/2011-summer-conference
  3. Take art classes with my father and sister in Vermont  http://www.black-horse.com/PDF/Art%20Event%20Flyer%202010.pdf
  4. Take H. and his friends to 6 Flags for his birthday
  5. Continue to work hard and have passion for my day job
  6. Take family to Ocean Grove, NJ, Jones Beach, or Shelter Island over 4th of July weekend
  7. Keep writing every day
  8. Toes in the grass and picnics in Riverside Park as often as weather allows
  9. Get a mani-pedi
  10. Join Improv or comedy class
  11. Meet with agent again on book
  12. Revisit my young adult novel
  13. Read all books for book clubs
  14. Keep working out every day — tennis, Pilates, biking, or running
  15. Visit a church a day once kids go to camp
What’s on your Summer To Do list?
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I took this picture riding my bike to work yesterday. I felt like I was in the tropics, but I was in Manhattan.

Stronger in the Broken Places

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Chris loves to watch the kids play sports, especially Hayden on the Little League field. He loves to teach them cards.

The Parkinson’s Disease makes some typical Dad things difficult, but he does them any way. He never says, “I can’t.”

He loves to cook, and he is a slow cooker.

His ability to show his love is slow too. He can’t help it.

Can any of us help who we are or what we get? I try to remember this when my husband falls asleep when I’m talking to him or walks away in the middle of a conversation. He leaves a mess worse than Linus in his wake. He refuses to leave his computer chums for real-life friends.

I try to remember who Chris used to be. I try to remember the quick flick of his wrist on the tennis court, the persistent phone calls to place our kids into pre-school, the lover of literature, the smooth dancer at the Broadway show’s after-party. He is still all of these things, but they are slower to show themselves.

I lean on and love other dads too. They might not even know how much I need them — my kids’ uncles, grandpa, friends. I lean on these father figures so my kids get the attention, love, support they need.

Fathering (and parenting) takes a village. Sometimes I feel I should do it all alone. Or I feel that that there is only this one person or one way to be a family. Or I feel I shouldn’t reveal our/my weaknesses.

But we are stronger in our broken places (I think that’s a book title). The shoulder bone Hayden broke when playing baseball is stronger at the point of its break, which happened to be the growth plate.

When we lean on one another, we are stronger. We reinforce the growth plate.

By remembering why we love someone and getting over the frustration of that challenge (if possible), there is an ease and a deep gratitude. And if that doesn’t work, there’s always anti-depressants.

I’d like to write more about this but I have to go and make a Father’s Day breakfast. I have to call my own father and say, Thank you!

Everything’s Fine

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Putting this spin on my life is exhausting. I was thinking about this as I scanned the Michael J. Fox article and looked at his photo on the cover of Good Housekeeping when getting my nails done yesterday.

Sometimes it’s not fine. Sometimes I want to go, “Bad deal. Need a do over. Not happy. Nope. Not working out here.”

I feel pressure — from Michael J. Fox? — to make the difficult seem easy and the abnormal seem normal. So what if my husband has Parkinson’s Disease? I should just grin and bear it (as Tracy Pollan seems to do. You don’t hear her saying, “It’s tough living with this dude who has Parkinson’s Disease.”)

Look, Michael J. Fox is an amazing person doing amazing stuff but not every person with Parkinson’s can perform at his level. Perhaps Fox’s nobility and engagement in life (and his more abundant resources of physical therapy and money and access?) make me and other families with Parkinson’s feel a failure. Sometimes, the disease actually kicks your butt and you are not happy and smiling and ready for the cover shot. You are not always looking up.

Occasionally someone will say to me, “I don’t know how you do it. He would drive me crazy.” And for that I say, “Thank you!” Because the people who say, “He looks great. Can’t even tell there’s anything wrong.” make me feel bad, like I shouldn’t notice his crazy behavior or at times embarrassing demeanor. And to those of you who are right now saying in your head, ‘Mary Beth, it’s worse for him.’ Yes, you’re  right. And I know that. And I’m sorry and I feel sad about that. I try for compassion on a daily, hourly, momentary basis. But this is my blog and my truth.

How positive should I be? How much is my positive attitude denial? How optimistic can any caregiver be? How encouraging should we be when faced with a disease in the family? And can we acknowledge in all honesty that times can be difficult?

And of course times can be great. And I look for and find joy. I try to follow my own rules to live by and find a deeper meaning to my life.

I do have a lot of gratitude for the people in my life, especially for my husband. That doesn’t mean that I don’t have a lot of frustration too. It’s a dance of honesty, encouragement and denial. And to all of this I say to Michael J. Fox’s smiling face on the cover of the magazine, “Everything’s fine, except when its’ not. I’m always looking up, except at times, when I look down. And life is made of moments of happiness and sadness; health and illness. It’s all part of the fabric of this life.”

Healthy Eating

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Went to Dr. Etta Frankel yesterday for a check up — bored her with my recent medical sagas of basal cell carcinoma and plantar fisciitis.

Dr. Frankel is normally even-tempered, but she was mad. “I see you tan and freckled. That is not good.” When we sat down in her office, she wrote out some internet sites to buy SPF clothing and handed me the prescription.

She asked about my husband’s health. “It’s difficult,” I said. “Living with someone with Parkinson’s.”

When I pointed out the slight uptick in my weight, she looked back at her records. “Yes, you were 133 in 2003.”

A bit more than a pound a year. Again, “Not good.” So she handed me a diet sheet mimeographed from the early 1970s. On it, there’s a long list of what not to eat and drink, like pasta and wine.

So when I came home, after the doctor’s appointment, then work, to surly children and a difficult spouse, I poured myself a big glass of wine and made pasta for dinner. It was Chris’s idea.

I’m not at all a food blogger. But this was good.

Start water to boil for pasta.

  1. Sauté white onions, sliced thin, in olive oil
  2. Add cherry tomatoes cut in thirds
  3. Add black olives
  4. Slice fresh basil into little ribbons. Set that aside with a bunch of little mozzarella balls.
  5. Cook the spaghetti
  6. Then add the set-aside mozzarella and basil and any old thing you find — pine nuts, broccoli, chunks of salami — into the olive oil mixture

Toss it together. Great summer dinner. On the side sliced strawberries and grapes. Chris spread sourdough bread with an olive tapenade.

We sat down to eat, all civilized, C. asked, “How was your day, Mom?”

“Good, I went to the doctor and got a good report.” I’ll start the healthy eating tomorrow.

When I mentioned that I might blog about our yummy dinner, Chris said, “Michael Tucker blogs about his meals.”

Name drop alert: Yes, he does. Chris’s friend, Michael, is an awesome actor and writer. Chris is featured in one of Tucker’s blog posts where Chris  is fondly referred to as one of the Fat Boys. The Fat Boys better go see Dr. Frankel for some dietary suggestions. Here’s Tucker’s blog. (Incidentally he’s married to the fabulous actress Jill Eikenberry, who brought a lot of media attention and awareness to breast cancer when no one else was talking about it. We refer to Tucker and Eikenberry as the Tuckenberries.)

http://notesfromaculinarywasteland.com/2011/04/12/fat-boys-ravage-queens-the-borough-i%e2%80%99m-talking-about/

Everyone Drives Me Crazy

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It could be the heat today. But everyone is so annoying! At work my colleagues expect all my work to be done last week. At home my kids yell at me to help them with homework. Genius takes time, my friends. You can’t expect a unicorn to work like a mule. Maybe I am just crabby.

I blame it on my husband’s Parkinson’s Disease. I blame everything on his PD.

And there is one other thing — one huge contribution to today’s overall sucky-ness. (If you know me, you know I’m rarely in this sucky camp. I’m usually in the glass-is-half-full camp. I stay happy because I have made up and followed my 7 Rules to Happiness and they usually work! But not today.)

Today’s pity party reached a crescendo when after racing my bike to get to one of my darling’s appointments at the orthodontist, I discovered I’d have  to cough up $295 dollars to replace each of my darling’s two lost retainers. That’s right. A set of lost retainers will set me back $590.

After the trip to the orthodontist I consoled myselt that when I got home, at least the house would be clean. See, Chris is extremely messy (blame the PD) (and admittedly, I’m no Felix Unger myself), but Wednesday nights are usually the one night when I don’t have to kick the house into some semblance of order when I get home from work. Because A., the cleaning person, works magic in our apartment on Wednesdays.

I was thinking ‘Tonite, the house will be clean and I will make myself some jewelry.’ I’d biked to the craft store and bought some beads. I like to be crafty. It’s calming, fun, productive. But A. couldn’t make it today. So I spent the night, cooking, cleaning, being generally pissed off. I didn’t make any jewelry. I just helped with homework and cleaned the kitchen.

Okay, I can’t end this post without admitting to a few highlights of my day too: Laying on the grass at Barnard with Liz at lunchtime and reading the kids Deenie  by Judy Blume for our Mother-Daughter book club before they went to sleep.

Tomorrow’s another day. I doubt it will suck. I will try to be grateful and I will try to be happy.

Pile on People and Activities

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My number one rule is pile on people. I like to pile on activities as well as people. It is my way of coping. I like to say yes to every invitation and expand on every good idea offered — lessons I learned from performing improv.

Calder's Red Mobile, creative commons

Families are like fine art mobiles — when one member swings one way, the others move another — compensating, balancing, attempting to maintain equilibrium. With Chris’s increased slowness, I take on more. Like the arm on a mobile, I swing faster. I fly one way, while other pieces bounced along. Life swings every one. With Chris away with siblings in the Adirondacks this weekend, I did more. And I liked it.

When he’s gone, I depend more on friends.

Here was my Sunday. I got up early.

  • journaled
  • blogged
  • cabbed to pick up Charlotte from a sleep over
  • brunched at friends’ — lovely — bagels, lox, whitefish
  • dropped Hayden at church
  • napped for 20 minutes
  • got the car
  • picked up H. from church
  • dropped one child off at Randall’s Island, Icahn Stadium
  • drove to Cold Spring to get Kate from her sleep over
  • walked around with friends and K. in Cold Spring
  • watched the people fishing
  • chatted, picnicked by the harbor with friends
  • ate yogurt at a yummy yogurt place
  • picked up K.’s things from Garrison
  • drove K. and myself back to Randall’s Island
  • cheered H. and his team at track and field events
  • drove friends and kids back to city
  • parked the car at a lot
  • made dinner — chicken, rice, broccoli, strawberries
  • helped H. pack for 5-day bike trip
  • cleaned
  • sent myself and the kids to bed at 10:30

In a family, there are tons of ways to cope when a spouse is out of town, sick, or just unable to deliver the goods. People tell me, “You do too much.” Yet I would rather pile on people, activities, work, exercise, kindness than pile on resentment, solitude, inertia.

I’m sure there’s a lesson in how to balance your life based on the image of  a Calder-type mobile. Balance is not part of my vocabulary.

Enthusiasm, passion, friendship, too many activities? That’s the way! Pile it on.

Walking to Work

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The rain is getting to me. I am going to walk the 45 blocks to work today.

Due to some burst pipe at my office building, my noontime yoga and Pilates classes have been cancelled for the last two weeks. I have discovered just how much I need those classes to combat my stress.

Just yesterday, I was walking the girls to school and heading for the subway. After a particularly stressful morning of finishing science projects before 8 am, I was thinking Wouldn’t it be great if I smoked? I could just blow smoke and watch the cars drive by?

And as I thought that, who should I see walking towards me, but my yoga teacher, Shane? Seeing her was a sign to make the healthy choices in handling life’s stresses.

We chatted a few minutes about when our classes will resume. Shane hoped by tomorrow. It’s always funny to bump into someone out of context. And as I’ve said before, my exercise teachers are the most gorgeous and nicest people you will ever meet.

I don’t know why I have been more worried lately — my husband’s Parkinson’s disease, his extended family’s financial situations, paying for the kids’ camps and tuition bills — I don’t know, just worried. 

And so here we stand, mid-week through a forecast of rain and gloom every day. If it’s only drizzling, I can walk and think today.

I must remember my 7 Rules. https://mbcoudal.wordpress.com/about/ And the things that always make me happy:  travel, parties, museums, art, hanging out with friends, working out, and getting a good night’s sleep. And so I will commit to these things. I’ll start with a walk in the rain.