Archive for July, 2009

Big “C” and small “c” caregiver courage

Friday, July 31st, 2009

Courage is such a big word, reserved for heroes who pull people from burning buildings, save little children from drowning, rescue coal minders stuck in the shaft, slowing smothering from the lack of fresh air.

Courage is for death-defying feats. Tiptoeing onto the thin ice, sliding the ladder out to the open water, calmly coaching the young boy on how to grab on.  A dog barks but the man never loses concentration.

“Just grab on and you’ll be OK. Yes, son, you’re going to be all right. Be strong now, be strong.  Here comes the ladder.  Reach up. Grab the end.  A little closer. You’re almost there, almost there. It’s going to be OK.  I have you. I have you.”

Then screams of victory.  Women and men crying. Dogs barking. The parents heaving, gulping frigid sobs as the EMTs wrap the boy in a sliver space blanket, lift him in their arms and run to the ambulance.

The courageous fireman puts the ladder back on the side of the truck. His buddies slap him on the back. They high-five.

Oh Courage, you strong savior. You’re Courage with a capital “C.”

The day-in, day-out caring for someone who is sick is courage, too, but small “c” courage.  There’s no glamor. No big momentous event. No crowds cheering you on, slapping you on the back after you help the person you love inch his or her way into the bathroom at 3 a.m.  Waiting outside the bathroom door, ready to help the person slowly, slowly get back into bed. This courage won’t make the six o’clock news. It won’t win special awards or recognition. It won’t even deserve a conversation when people check in with you tomorrow.

“How is she doing? Anything new or unusual?” they call and ask.

“No, everything is about the same,” you say.

They don’t know about small “c” courage. The courage not to complain, feel badly for yourself that you’re stuck sleeping on the couch so that you can jump up at 3 a.m. for bathroom duty. Courage not to cry in front of the sick person the next day because you’re so tired that all you want to do is sleep in a bed, not having that “help” antenna up.

This small “c” courage is Love. Love with a capital “L.”

The Wise Woman Goddess of Worry goes bananas

Thursday, July 30th, 2009

The little Cape house on the dead end Cape Cod street was quiet.  The television in Bette’s room automatically turned off at 10 p.m. She usually fell asleep at 8 p.m. but liked the TV on in the room. Strange company, but, hey, whatever works when you’re sick.

I had gone upstairs to the den after mom settled in after dinner and turned on the other TV, snuggling into the plaid pullout couch and the cranberry afghan my grandmother had made years ago.

Ah, eureka! Thursday night and a new episode of “30 Rock,” one of life’s small pleasures while living at my mother’s house while my family was in their own orbit back in Rhode Island.

After “30 Rock” and some inane sitcom it was time for the routine — a little flossing, scrubbing the teeth, scrubbing the face and then globbing on that super-thick Wise Woman Goddess night-time face lotion for “mature women.”

Maybe at last I’d act mature, like Audrey Hepburn. Elegant. Soft spoken. Manicured. As flawless in beauty and social skills as Audrey’s skin.

But wait, is that the phone ringing? No one calls the house at 11 p.m.

“Is this Elizabeth Kelly?”

“No, this is her daughter. May I help you?”

“Well, Mrs. Kelly was here for blood tests earlier today.”
“Yes, and…” I quickly replied, clearly losing Audrey’s coolness.

“Well, I’m sorry to disturb you so late but I’m required by law to call because Mrs. Kelly’s potassium level is dangerously low. It’s below 2.5. We’ll also be calling her doctor.”

“So, exactly does this mean. I mean, what should I being doing?” I asked.

“Well,” the lab doctor said, “Call her doctor first thing in the morning. And give her some bananas as soon as you can to get the potassium levels up. The doctor will also likely prescribe medication. Sorry to have to have had to call you so late.”

Geeze, Louise, I thought hanging up. Now what.

I went online and Googled “low potassium.”

Up it came. “When the potassium level drops to less than 2.5mEq/L then the condition is life threatening and in need of emergency medical attention. The effects of low potassium in the body is the formation of a potentially fatal state called “hypokalemia.”

Hypokalemia? Jesus, I thought. What if she dies of this instead of the cancer?

I went downstairs and tiptoed into Bette’s bedroom. No sound, no movement. Oh dear God. I walked closer and put my face down close to hers.

Yes! She’s breathing!

Then I went into the kitchen and got two yellowy-green bananas and went back into her bedroom. Medicine time.

I looked at my mother’s face. She looked so restful. Almost young. Could it be possible that you lose all your wrinkles when you have terminal cancer? She was lovely in a way I had never seen before. Or maybe it was how the streetlight was shining through the peach-colored bedroom curtains.

“Or maybe,” said the wise woman goddess voice in my head, the Audrey Hepburn mature woman, “she’s finally having a good night’s sleep for the first time since the brain surgery. The medicine is making the potassium levels low but the sleep is making her beautiful.”

“You’re right wise woman,” I said, walking back to the kitchen and tossing the bananas on the counter.

Back upstairs I went, turning down the thermostat to 63 degrees, climbing into bed while trying to push Bobby McFerrin’s “Don’t Worry, Be Happy” song our of my head.

I was happy that Bette was sleeping soundly. But I worried all night. It’s part of what we caregivers do. You get really good as the nighttime Wise Woman Goddess of Worry, watching over the sick, the unknown, the 2.5 potassium levels.

And that’s why I highly recommend that you stock up on extra jars of the Wise Woman Goddess night cream. Maybe even wear it during the day.

What’s your Paul Newman solution?

Tuesday, July 28th, 2009

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I’ve always thought Paul Newman was a good actor, but I never felt the swooning sexual attraction that my mother and her friends had for him.  Of course, they were Paul’s contemporaries and knew him in the day – his and theirs.

I call him Paul, not Paul Newman, because I feel like I’m on a first name with him.

Not because I fell in love with those blue, magical eyes or ever got the heartthrob thing – even when he starred with Robert Redford in “Butch Cassidy in the Sundance Kid.” (Robert Redford was another story.) Not because he was so memorable in that first movie Bette let me stay up late to watch. (It was “The Silver Chalice” and all I could remember at age four was how bad an actor he seemed. And that the movie had props more fake than the ones we used out in the garage for our plays.)

No, I love Paul for his salad dressing.  Not the Newman’s Own Creamy Caesar with a drawing on the label of one of those Roman guys he played in that boring movie with the bad acting.  The salad dressing I love Paul for is Newman’s Own Olive Oil and Vinegar.

As caregivers, we are in charge of food, but thinking of what to make gets harder and harder the sicker and sicker the person gets.  When sisters or aunts come in to beef up the caregiver posse, the challenge of what to make for dinner magnifies.

But Paul saves me every time.

You see, if you pour Paul Newman’s Olive Oil and Vinegar salad dressing on anything  it goes from bland to good. Not great, but no one is expecting great in these circumstances.

Boil some Rigatoni, add cherry tomatoes, Calamari olives and drench it with Paul Newman’s Dressing.  Cook that six-minute Orzo, add some basil, feta cheese, and leftover cherry tomatoes and drown it in Paul Newman’s. Salad? Well that’s a no-brainer.  Marinating meat or chicken?  Quick run out and buy several more bottles.

After one particularly stressful day, my sisters and I plopped ourselves in stools and draped our exhausted bodies over the kitchen island, reaching for chips and cold beers.

“What are we going to do about dinner,” Nancy asked. “Should we call for pizza?”

“Nah,” the rest of us said, “Not pizza.  Isn’t there anything left?”

We found a couple of cans of tuna fish, some lettuce that was wearing its expiration date like a kid coming in after playing in a thunderstorm, a tiny wedge of cheese of unknown variety – bland but no mold – and some frozen peas.

Renie started to open up a jar of mayonnaise for the tuna.

The rest of us screamed, “No! Not mayonnaise.”

We went in the pantry and found a fresh bottle of Paul Newman’s.  Dinner was delicious.

God bless Paul Newman. May his soul rest in peace knowing that his generosity lives on, helping people in ways he never imagined.

Private Benjamin reporting for caregiver duty

Saturday, July 25th, 2009

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I’ve always hated the war metaphor that’s used in business and marketing, my profession.

What’s the company’s mission and target.  Seize the opportunity. Capture market share. Hit the ground running. Especially that last one.  It makes me think of a fire alarm ringing in an office and all of sudden everyone jumps out of their cubes, falls to the floor, and starts running, crouched down low like they’re avoiding an ambush.

But I digress.

Because signing up to be a caregiver for someone with a terminal illness deserves the war metaphor. This is life or death. The stakes are high. The enemy -  that sneaky, unpredictable disease – is wily, hiding in the overgrowth, launching surprise attacks all the time.

And we caregivers, well we’re sort of like Private Judy Benjamin, that Goldie Hawn character in that old 1980 movie.  Judy Benjamin is dingbat spoiled princess who, as she admits, “is 29 years-old and trained to do nothing.”

We caregivers are Private Benjamins. We sign up thinking that we can do this. How really hard could it be?  And like Private Benjamin, we know we’re in trouble on the first day when basic training starts and we have to carry equipment, take orders from people we don’t know or like, follow new rules, and wrestle with sleepless nights and days of looking like hell because there’s just no time to take care of ourselves.

And, of course, there’s latrine duty, and KP and all the other nasty assignments that just have to get done.

And there’s really no escape. You’re on duty.

Yet, unlike the army where you know when your term of duty is up, there is no schedule for caregivers. Will the person you love live for two years, two months, two weeks?

You ask the doctor and the answer is, “No one really knows for sure.”

So you go back to the front-lines. Hoping that you’ll at least get granted a weekend furlough from another family member or friend who can take over. And then you worry that maybe you should stay on duty because you’re getting a good sense of those guerrilla warfare types hiding in the bush. You know the signs and how to protect the sick person better than any solider coming on duty.

Should you stay or should you leave.

There’s no tough drill sargeant to tell you what to do.

Take the weekend pass. Get off the front lines. Leave the base.  The war will likely still be raging on Monday.

The Harry Dean Stanton army recruiter character tells Private Benjamin  that she can be “all that she can be.”

Ditto for enlisting as a caregiver.

Dew vs. fog, sadness vs. grief

Thursday, July 23rd, 2009

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What’s the difference between dew and fog, sadness and grief?

Dew and fog are musty, damp, cloudy. But just as they sound, they’re profoundly different. As are sadness and grief.

Dew is dainty, ending in that soft “wooh” sound. Nothing serious, just a sprinkling of juicy mist. Enough to caress the lawn and moisten the leaves so they glisten when the sunlight does wake them.

Fog is a serious dude. The “ffff” sound tells you some strong,  heavy vibe is coming to settle in for a while. The hard “g” sound in fog means, “Back off sister. This is my territory and I’ll move on when I’m good and ready.”  Fog is like a thud, perhaps ominous, certainly preventing any plans because it’s so strong and determined.

Fog, like grief, is Rambo, while the sad dew is a young Goldie Hawn. Dew lifts by mid-morning. Fog envelops.

Writing down your grief

Tuesday, July 7th, 2009

Psychological studies have found that writing about stressful, traumatic or emotional events, like caring for a dying person or grieving their loss, helps people more quickly recover, both psychologically and physically.

James Pennebaker, a psychology professor at the University of Texas, provides these suggestions for writing down your grief:

Find a time and place where you won?t be disturbed. Ideally, pick a time at the end of your workday or before you go to bed.

Promise yourself that you will write for a minimum of 15 minutes a day for at least 3 or 4 consecutive days.

Once you begin writing, write continuously. Don?t worry about spelling or grammar. If you run out of things to write about, just repeat what you have already written.

You can write longhand or you can type on a computer. If you are unable to write, you can also talk into a tape recorder.

You can write about the same thing on all 3-4 days of writing or you can write about something different each day. It is entirely up to you.

Whatever you chose to write about, however, it is critical that you really let go and explore your very deepest emotions and thoughts.

Poet David Whyte on losing his mother

In  “Farewell Letter,” a poem from David Whyte , he writes of receiving a letter that his mother wrote to him after her death. The end of the poem reads:

I know your generous soul

is well able to let me go

you will in the end

be happy to know

by God was true

and I find myself

after loving you all so long,

in the wide,

infinite mercy

of being mothered  myself.


PS All your intuitions were true.

Lew Newell on losing his sister Bette

It’s a gorgeous day. The sun is bright and warming.

A great day for my walk at South Cape Beach.

My thoughts turn to Bet as I knew the beach would do.

As I continued my walk looking for sea glass it became frustrating. Nothing!

I know what, I’ll just ask Bet and she will turn up a beautiful piece of glass.

But still nothing. ( Where are you Bet ? )

I know you are here, give me a sign. Still nothing ( Where are you Bet ? )

I couldn’t understand why there was no reply, no signal, no sign.

As I started to return I noticed two colorful sea ducks along the waters edge.

Gulls overhead floated in the breeze with grace.

The terns and plovers overhead squawked and warned me away from their nests.

The sun glimmered off the ocean, the Vineyard nearby.

Bet was everywhere around me and I finally noticed.

I no longer need to ask (Where are you Bet?)

Ashes to ashes, dust to joy

Monday, July 6th, 2009

There we were on the beach saying a prayer,  just Bette’s children and sister and brothers with the wonderful Rev. Paige Fisher on a cloudy, cool Saturday morning.

Then there we were in the icy cold Cape Cod water, flinging Bette’s ashes every which way, yelping like sea lion pups. Laughing. Screaming from the cold.  Smiling from a  joy that blew in from who knows where.

We thought this day would be unbearably sad, our final goodbye. Instead the day was a release.   We put Mom’s ashes into small plastic cups, swam out and flung  them into the unusually gusty June winds, along with  our grief. Good thing the wind was blowing out to sea, towards the Vineyard instead of towards us.

This is exactly what Bette would have wanted. All of us together, finding happiness instead of moping around. Sometimes it bothered us that Bette would block difficult memories, talking only about the good, dismissing those who insisted on dwelling on the negative  as “ridiculous.”

Now we know.

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Grieving is so personal. There’s no advice I can share, really, except to reflect on how the person you have lost lived life at his or her best, and make those qualities part of your life.  It’s the greatest praise to the deceased, and the greatest gift to yourself.