Category: Caregiving

Welcome Home

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A neighbor dropped off the cobbler and the soup.

I greeted him from behind the closed screen door.

“Welcome home,” he said; he turned away.

Small acts of kindness set down like homemade vegetable soup on your doorstep.

We live to lighten each other’s load, of course, we do.

Yet when someone lightens your load, it comes as a surprise.

The load unexpectedly lighter.

The heavy weight drops. You were unaware of how much you carried.

Just because of the soup.

Just because you’re anxious,

Doesn’t mean you’re not right to be. You still get to laugh.

A lot.

Laugh more.

While you dance and the floor collapses and the space expands.

And yes, in meditation, the rising and falling of breath, the expanding and collapsing.

The rising and falling of sunshine and moonshine, dance partners,

Taking turns.

Like this planet turning around the sun.

Life and home and welcome and distance.

Gone from the city for a week, in ways we are more connected.

We are more reflective.

Who knew walking the dog would save me?

I never had a dog. I’m liable to make mistakes.

Who wants to be perfect anyway?

Yesterday, I gave up. I said, “Forget the family dinners. It’s too much work for me. Too much bickering from the three of you.”

And then the kids cooked dinner and I set the table.

I was on an island, and the kids came on a boat to rescue me.

And we laughed. And we bickered more. And cleaned up together. Mostly.

This is not Gilligan’s Island. Or a sequestered monastery in Switzerland.

But life is richer and more full of gems.

Gems of compassion and heartbreak.

The world is both simpler and more complicated than we ever knew.

I needed the homemade soup, the pizza, the rescue from my neighbors, children, friends.

I needed the “Welcome home.”

I took Charlie for a nature walk this morning. Travels with Charlie.

Family Update

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I posted this info on CaringBridge today. That website is so helpful for staying informed on the health concerns of family and friends. So here’s the latest on my friend and family (and spouse) John Christopher Jones.

Chris has been struggling lately. He has lost a lot of his get up and go. This is the result of Parkinson’s (diagnosed in 2003) and shorter periods of the medicine kicking in and doing its thing.

We are taking some proactive steps. And looking in to some alternative living situations where he can get more care — one way we’ve done this is through hiring our beloved caregiver Loreeta to come and spend the night four or five nights a week for the last couple of weeks. She helps Chris up several times in the night so that we all can get a good night’s sleep. Hayden and I and any other child or friend who is around are all on duty at all other times to give him a lift or a push or adjustment or whatever’s required. While Chris still loves to shop and cook, his mobility needs are becoming very challenging.

We realized how challenging things were for Chris when he went for two weeks of respite care to the Will Rogers Home in Saranac Lake. Chris totally enjoyed the activities — hours of bridge and outings. He saw a moose! But Chris needed more help than an independent living location allowed — for example, he was calling to the front desk in the night for a hand up to get to the bathroom and this was a bit beyond the pay scale of the night clerk. So for the last few nights there, Chris hired a live-in helper.

Saranac Village, Will Rogers Home. Chris enjoyed happy hours on the porch and pool in the basement.

In any case, we’ve begun doing some due diligence back in NYC — researching places for more support. Chris would like to stay near New York as this is where his family, friends, church, career, life have been. We visited Woodland Pond in New Paltz where our friends live. But it seemed like a pricey investment and may not even have been viable due to Chris’s preexisting condition of advancing Parkinson’s — and again, he needs more help than independent living places offer.

Next week we’re looking at a residence on the Upper East Side. And Chris will be going for respite with his sister, generous and caring, in Florida in the coming weeks. We are blessed with loving families.

All this news and on a personal note, my wonderful father Edgar’s health is declining — his heart appears to be problematic and he has lost a lot of mobility as well.

So keep us all in your thoughts and prayers. The girls are entering their sophomore years. Catherine has returned to Kenyon College last week. She has a job in the film department and thinks that film might be her major. And Char heads off to Northwestern University as a transfer student — perhaps majoring in theater and computer science. Hayden had a great summer making beats and teaching at Horizons at St. David’s summer camp. He was an Italian and music major at Wesleyan and has begun looking for a job. We love watching our kids grow into young adults. They are and have always been our front and center — the heartbeat that we dance to.

One more side note: On this year’s Labor Day, I want to thank the unions that my husband is a part of — the SAG-AFTRA Union and Actors’ Equity. Our family gets our health insurance through SAG-AFTRA and it has always been a great comfort to have such a strong union supporting our family and, especially, Chris.

Alone Together

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I like when we are alone together – it is one of the reasons that I love writing workshops. I set people on the path to write and then we write. Parallel play, we called it, when the kids were toddlers, doing their thing separately, happily, together in the room. Safe, solitary, together, alone.

Sometimes in art class, I feel all the other painters and I have dropped into a zone together. Like whoosh, we took an elevator down to a sacred place. We’re all this deep quiet, meditative place together, working and creating.

Any creative and collaborative venture can do this. Theater, too. When people are rehearsing their lines separately and then come together and one at a time, take their turns.

On Sunday, Chris and I, each played several parts in a reading of Under Milk Wood by Dylan Thomas as a part of New York City’s Welsh Church. I played Mrs. Organ Morgan.

Mrs. Organ Morgan: But they’re two nice boys, I will say that, Fred Spit and Arthur. Sometimes I like Fred best and sometimes I like Arthur. Who do you like best, Organ?

Organ Morgan: Hm? Oh, Bach without any doubt. Bach every time for me…

This got a big laugh. But I certainly can relate to Mrs. Organ Morgan. Chatting away, happily, and then realizing that I have not been heard. Sometimes I feel alone in a marriage. And hey, tomorrow’s Valentine’s Day so I am offering a dollop of reality with all the day’s sweets: being married to someone with Parkinson’s — or any serious illness — can be lonely.

After the Under Milk Wood reading, an acquaintance of Chris’s patted him on the back. “You’ve still got it.” I hope that this made Chris feel good – that his Parkinson’s hasn’t ended his acting career. While I can complain about my loneliness, let’s face it, he’s the one who really got the raw deal.

Back on the bright side: I dig creating theater for the communal and solitary aspects of it. Everyone buys into a shared imaginative scenario. There’s magic in suspending disbelief. To me, it’s therapeutic to drift off into a dream-like world.

All creativity and making things is therapeutic. I like to make art, make friends, make dinner, simply make.

Lately, I have felt a new blossoming — thinking about possibilities for creative living and working.

Under Milk Wood takes place in an imaginary Welsh village Llareggub, which comes from ‘Bugger All’ backwards.

Thought for the day:

We are not wholly bad or good, who live our lives under Milk Wood – prayer of the Reverend Eli Jenkins in Under Milk Wood.

Successful Aging and Your Brain (on Parkinson’s)

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Last night Chris and I attended a fun JCC Parkinson’s Holiday Party. After rounds of singing and before the raffle, music therapist Barbara Yahr, and Parksinson’s docs Alessandro DiRocco and Rebecca Gilbert spoke about ways to successfully grow older with the disease.

Here are four take-aways — and these apply to everyone:
1. Get more social. Apathy is a real problem for people with Parkinson’s (and thus, their families), because the dopamine, the reward mechanism in the brain, dwindles. To combat this, make sure that you’re getting out and continuing to wire new neuron pathways through interesting conversations and activities. Change your routine. Don’t do what you’ve always done.
2. Eat well. Best foods for Parkinson’s? They really don’t know. Someone from the audience recommended non-inflammatory foods, but the doctors on the panel could not confirm that this was the optimal diet. There was some consensus that the Mediterranean Diet works well for everyone as we age.
3. Be active. What’s the best kind of exercise? The one that you do! If you have Parkinson’s, exercising for 45 minutes six days a week will likely stave off the steady decline.
4. Make a joyful noise. Music helps. Anecdotally, Yahr spoke about the magical powers of music — a way to communicate when speaking fails. And the docs emphasized that any way of making or participating in artistic endeavors — fine arts of performance arts — is good for the brain.

Caroline Kohles
Caroline Kohles: Chris always says she should receive a genius grant. One of the amazing JCC Parkinson’s teachers, Caroline sparks health through exercise and a growth mindset in her NIA class. (photo courtesy of NIANow.)

So, as the moderator of the panel and Chris’s great friend and brilliant teacher Caroline Kohles summed it all up: “Keep a beginners’ mind.”

Keep growing mentally because the brain, at any age, has neuroplasticity. Instead of a fixed mindset, a growth mindset, built on a foundation of persistence, hard work and optimism, provides maximum health benefits.

Creative Marriage

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In writing class, when we read writers’ memoirs, we are all a bit like voyeurs. We like to see how others do it — how they get along with their partners.

It is always interesting, to me any way, to read about marriages. How much are the lovers’ lives, like vines, intertwined? Although I know the topic is tantalizing, my marriage is difficult for me to write about.

My daughter recently texted me this picture of me and Chris — I think it was from the premiere of M. Night Shyamalan’s The Village.

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(Pictures are always fun when people are not looking at the camera.)

Let’s face it, I have always been a bit secretly jealous of Chris’s amazing acting career. It’s true I have my own IMDb page and when one of my students discovered this, he has begun greeting me as Sabrina Von Savage, my character’s name in We Might Be Superheroes. Alas, I never achieved the same status as an actor that my husband did. Men have it easier, even in film. And yes, if you say, in his defense, he’s a greater actor than most (including me), I will have to agree.

But still. I am not without my achievements. I did and do achieve greatness through my writing and, hopefully, through my teaching. These successes, however, are harder to quantify.

So back to marriage, that equal partnership. As I wrote yesterday, there is no greatness or genius without a team or a partner behind you. I have been able to expand myself because of Chris. (And, no doubt, I have limited myself too.)

Chris’s Parkinson’s Disease has slowed his ability to move. Diagnosed about 15 years ago, he needs more physical support than ever. He uses a walker or walking stick to get around. It can be taxing on me physically. Does he need more emotional and psychological support too? Maybe. Executive function skills? Yes, these are slipping.

And me? Yes, I need more help, but I am not good at asking for it. Or expressing my vulnerability. This is the lesson from the Dr. Blasey Ford — you tell your truth and you will be glossed over, or worse, ridiculed by the president.

Times are tough for women and for caregivers, who, let’s face it, are mostly middle-aged women, a slice of the population so easily dismissed. But I refuse to be written off. I refuse. I am, after all, a proud feminist and I do believe that I have a professional contribution to make to the world — in addition to, but not limited by, my caregiving for and with my family members.

On Monday, we are going to Chris’s neurologist, who, too, is named Dr. Ford. I am compiling a list of questions for the good man. We always ask about the trajectory of the illness — i.e., ‘if he is at this point, when will he slide to the next low point?’ The docs are always cagey in their replies. They don’t have crystal balls. They refuse to give up on anyone.

Well guess what? Neither do I. I am a member of the creative resistance. Je refus.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light. – Dylan Thomas

Families with Parkinson’s Disease

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people coverThere they are again. Staring at me as my nails dry at Susie’s Salon on 72nd Street. Michael J. Fox and Tracy Pollan on the cover of People magazine. I wish I didn’t resent their affection for one another and their airbrushed pictures of life with Parkinson’s.

Despite being married to an actor with Parkinson’s, I never felt our Coudal-Jones family and the Pollan-Fox family had all that much in common. They seem to have an ease with the disease. Maybe I am just jealous.

Maybe it’s the money. While Chris and I have done well financially, given that we are artists living in New York, we never had an endless stream of cash for the support of caregivers or chefs or whatever the heck very rich people spend their money on.

I don’t want to feel sorry for myself. For self pity is a hole I could fall into and never climb out of it. (Or to paraphrase Cheryl Strayed, ‘self pity is a street that you don’t want to park on.’) Let’s face it, Jones and Fox, like all people with Parkinson’s, have had different trajectories with the disease.

I feel compelled to emphasize the positive after reading this article (or any time really). Chris is going strong after his diagnosis 15 or 16 years ago. However, he is definitely slowing down. This makes me sad. There are times when he gets stuck and cannot move. Times when he shakes and cannot stop. There are times that he drools or hums incessantly. And God help me, I find some of these major physical shifts so disheartening. I am more impatient than Tracy Pollan. I try to stay positive.

The other thing I resent and again, God I wish I did not resent this, is the way that Tracy Pollan gave up her career. According to the recent article, Pollan was the bright one, the steady and hard working actor while Fox was the goofball. Why did she give up her work? Oh, to raise the children. Right. Right.

Well, I raised the children and I worked too. Sometimes, several jobs. And don’t get me wrong, I have always loved my work. My work has given me a purpose and a value, not to mention tuition money for the kids. Is it my feminism or my work ethic or simply my jealousy that wishes that Pollan would’ve been a film producer or continued to do her acting thing, too? She seems to have been a professional caregiver. (Not that there’s anything wrong with that.) Her work was unpaid, but likely, she continued to work hard. It’s hard work to make caregiving look easy.

But back to my story. It does not have to synch and jibe with any other wife who has a husband with Parkinson’s. I do not have to be on the cover of People. I just have to be me. And Chris can be Chris. And our kids can be who they are. Likewise, the Pollan-Fox fam can be themselves. We all deal with it in our ways. And the one-day-at-a-time way of dealing with life never fails. Letting go of comparing ourselves with others also seems failproof. So I will let it go and find a way to gratitude.

Just one last wish: that for once, someone famous who is struggling with a chronic illness like Parkinson’s, would say is, “It ain’t always easy.” That’s it. I don’t need their family money or their love for one another (okay, well, maybe a little). And I must pause for a minute to admit here that I do appreciate their quest for a cure. They work hard on that. And they have leveraged their celebrity for a good — no, a great — cause.

Every so often, though, I long to hear, “We have struggled with this.” Okay, then give it a beat and continue, “But we’re still here. We’re still trying to make our lives the best they can be. We’re still going to work. We’re still trying to love one another and be loved.” Because, no one is perfect — not even the smiley, happy couple on the cover of the magazine — but we are all trying. And every family has its struggles and its stories. And every story could go deeper. Everyone edits their lives for the sake of word count, print space, or how they appear on social media.

Let me forgive Michael and Tracy a little and acknowledge, on behalf of all families with a chronic illness like Parkinson’s, “It ain’t always easy.” Thank you, everyone, for continuing to show up.

Be real. Be loving. Be patient.

“Self-pity is a dead-end road. You make the choice to drive down it. It’s up to you to decide to stay parked there or to turn around and drive out.”

— Cheryl Strayed

A Crowded Elevator at the Hillary Fundraiser

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When my husband I attended the Hillary Clinton Victory Fund Party after Secretary Clinton won the Democratic nomination this spring, we got the cheapest seats at Radio City Music Hall. Still. We were psyched to be there and were, of course, blown away by the performances of Elton John and Katy Perry and the words of Jamie Foxx and Chelsea Clinton.

at-radio-cityAnd after the concert, my husband Chris who has started using a cane/walking stick to get around, saw the open elevator and tried to moved towards it quickly, although due to his Parkinson’s Disease, he moves slowly. The doors began to close.

A girl, about ten years old, who held the hand of a woman who appeared to be her grandmother, put her other hand in front of the closing elevator door.

“We’re waiting for you,” the girl said to Chris. She looked around the crowded elevator and said confidently to the strangers near her, “We can wait for him. We can make room.” Her grandmother smiled patiently at us, then proudly at her girl. We made it.

These are Hillary supporters — a confident girl who holds the elevator for a disabled man, a grandmother who takes her granddaughter to a Hillary event, a semi-retired man with Parkinson’s Disease, a middle-aged woman — me.

I do not see the likes of us represented in the mainstream media. It used to be that popular media cared what soccer moms thought. And truly, in the past two presidential elections, I have literally been a soccer mom so I appreciated the attention. But this year, none of my darlings are playing soccer. So I’m moving up the demographics ladder — apparently to a spot where I’m not really noticed anymore.

In a way, it doesn’t matter. Because, although the media may be more concerned with the views of Trump’s deplorable white supremacists, I know — and that little girl knows, and that grandmother knows, and my husband knows — that Hillary and her team will wait for us. They will hold the elevator for us, even those of us with the cheap seats, and especially those of us who move differently or slowly. And they will make room for us when we get there. And our leader will not be an older white male who spouts hate.

No, our leader will be a good and kind, hopefully confident, girl who includes everyone. We may not be represented in the evening news, but we are looking out for each other. We will look out for you too. Take your time. We’re holding the door open for you.

Work Life Balance

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I am lucky that I have two really wonderful part-time positions which together just about equal my former full-time salary

The world of work, for me, is a patched-together affair. Like a quilt, I provide comfort and care.

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Chris yesterday at our block party.

Although I work a lot, I still need time to care for the family. Chris’s Parkinson’s impinges on his life and our family in small ways. While he is still capable of doing most of his own daily tasks, increasingly, over the years, there are ways the kids and I have had to pitch in — provide small services like helping him to stand after seated a long time or reminding him to take his pills.

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Me and Char at our block party. We chatted with our neighbors and local politicians.

Beyond paid work and caring for family work, I need time for self-care — work on my novel, my essays. Or simply read my book for book club. Or prepare a nice dinner party or plan some fabulous trip. (I have absolutely no upcoming trip and this always unnerves me — when am I going to go where?)

I rarely see a story of my patched-together work-life balance in popular culture. Although today’s cover article in the New York Times Sunday Review talks about “A Toxic Work World” where only the young, childless can survive. I agree. While society has changed, our expectations at work have not. Our work life is no longer Mad Men and our family life is no longer Fathers Know Best. I more identify with Frankie in ABC’s The Middle — overworked, struggling, but still, funny, hopeful.

Unlike Frankie, I am an intellectual too — a middle-aged writer, teacher, editor, just trying to keep it together — offering love and friendship and trying to make a very real positive impact on my world.

“We would think managing kids matters just as much as managing money,” Anne-Marie Slaughter, author of the Times article says. “We can, all of us, stand up for care. Until we do, men and women will never be seen as equal; not while both are responsible for providing cash but only women are responsible for providing care.”

I want to believe politicians are talking about this too. After all, Hilllary Rodham Clinton wrote the book, a million years ago, called, It Takes a Village. A cynical culture may refer to the title sarcastically or see the treatise only politically, but I see it as a reminder — none of us do it alone. Even geniuses, like the Beatles or Mother Theresa or Einstein, drew upon the wisdom and received help from their communities.

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I snapped this pic from my bike ride to work the other day. Riverside Park.

I believe we are due for a cultural shift. And this may be the message of the pope when he flies through town this week. Caring for each other is way more important than competing against each other. I want to be a part of a culture of caring. Utopian? Let’s try it.

Like the song from South Pacific says, “If you don’t have a dream, how you gonna have a dream come true? Happy talk. Happy talk.”

Girl Cave

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My girls and me at camp yesterday. Girl (and woman) power!

I propose modifying this popular concept of a Man Cave. Let’s create a Girl Cave.

I thought of this when I dropped my girls off at their all-girl camp yesterday. A Girl Cave is a place to regroup and recharge and be oneself, kind of like camp.

Batman had a cave; Batgirl needs one too. And Catwoman.

We all need an escape from the maddening crowd. Especially in New York City, our lives are hustle-bustle busy. We try to make time for a nightly family dinner, but lately, even that’s been a challenge.

For some people, their homes can be a cozy, warm place, a cave or a nest from which to fly or return. But honestly, my home is a worksite for me. There is always decluttering and tidying that must be done. (Chris is no longer good at picking up and if I don’t try to keep a semblance of order, the whole house of cards may tumble. Or so I think. (Likely, they do fine without me. But I like to think I am irreplaceable.))

I need a Woman Cave. Why do men get the Man Caves? Maybe my upcoming writing retreats will provide a cave-like fortress of nurture, relaxation, fun, rejuvenation for me.

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This is a Girl Cave. (Girls’ camp!)

After all, it is through my writing that I recharge, that I escape into my own Woman Cave.

On Retreat

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Leaving beautiful NYC today.

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I am retreating, heading out to Shelter Island for the night.

This week — of ER hospital visits, the launch of a big editing project, my teaching, encouraging my Number One Son to prepare his college applications, helping one of my girls’ with a birthday dinner party – has wiped me out. None of these experiences individually has the potential to floor me. But combined, I feel depleted.

I need a minute to unwind with a magazine or a walk or a good long conversation with a friend. (Or even the discovery of a cozy quiet corner to go back to work on my big project.)

When my kids were little, my friend K.P. told me that every year she tried to get away for a retreat – I think she mentioned Kirpalu. But the expense!

When I was on salary as a staff writer, biz trips served as a retreat in a way. I could focus solely on work. I didn’t have to cook meals or clean up.

I don’t really travel for work anymore, living the freelance life. So I’ve joined the lovely St. Paul and St. Andrew community for a day apart.

Here are some pics from Quinipet on Shelter Island.

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