Last year’s adventure helping my mother die was an extraordinary life experience. From it I learned that helping someone during their final months can be inspiring and rewarding in ways that you never thought possible.  You can find superpowers that you never knew you had.

To help caregivers find their superpowers (and stay sane, find courage, and deal with the everyday stuff that is heaped on you) I’ve just finished a soon-to-be-published book: “Be The Noodle: 50 Ways to Be a Courageous, Compassionate, Crazy-Good Caregiver.” Here’s the new web site.

This care giving adventure has no travel guide. No instructions to help us deal with the crazy things that happen — things that no medical, hospice, or traditional how-to-deal-with-impending death books explain.

From the mundane, like dealing with too many banana breads from well wishers and advocating for patient martinis with the oncologist — to the gut wrenching, like not being able to call 911 during a crisis once you sign up with hospice or struggling to be kind and helpful when you feel like a sleepless shrew.

The book should be published in a month. If you’d be willing to read it and post a review on Amazon, I’d be happy to send you a copy for free.  I’d also like to give away books to hospice organizations and priests, rabbis, ministers and other generous spiritual counselors in memory of my mother.  If you’d like me to send one of these folks a book , please email me their information  at lkelly@beelinelabs.com.

As the publication date nears, I will be changing this site to share information from the book and create a space where caregivers can share their own wild and wondrous caregiver lessons and advice.

Warmest regards,

Lois

Jello brain makes it hard to work, to plan, to read. So at night after Bette falls asleep I go to my  addiction –  House & Garden TV.  (HGTV for short.)

Mind you, I try not to watch it every night, late into the night, and I don’t watch the HGTV program about improving a house’s curb appeal.  Who cares about the outside.  But the shows where people look at three different houses and choose one to buy is a favorite. (Hint: if you’re stressed for time you can tune in at ten minutes to the hour and get a summary of all three houses, and see the winner.)

This house hunting show provides entertainment when all the sisters are together. It’s the one program we all like. No debate, simply mindless communal fun.

“Look at that house. It’s so ugly,” someone shouts at the TV.

” Look at the brown cabinets in the kitchen. Brown with the rose-colored counters and a blue tiled floor.? That’s a deal killer.”

“Why would two people need a 6,300 square foot home? I mean, two people with six bathrooms? That’s ridiculous.”

“Imagine having to clean six bathrooms every week?”

“I bet they’re going to buy house #3. Who wants to bet?”

HGTV is mindless entertainment. Easier than having to concentrate on a movie or  a book. Or have a conversation.  The voyeuristic element where you get to see how people live and decorate is such a good distraction.

But when my sisters are gone and I watch HGTV alone, my mind wanders.

“Which house will the Johnson’s buy?” says the perky HGTV lady.
Which week will Mom die?
“Will it be the 2,600 square foot contemporary 60’s ranch?”
Will it be before Andrew’s graduation?

“Will it be the much smaller 1,800 square foot classic craftsman with the pool?”
Will she make it through summer, one last summer at the beach?

“Or will the Johnsons choose the larger townhouse close to downtown with city views?”

Or will she decide to go before Memorial Day so none of us have to change our summer plans?

During the day we’re too busy to think. At night with just the glow of the TV lighting the living room the questions pop.

There are no answers. But I’m always pretty good at guessing which house the Johnsons and all the other HGTV house hunters will choose.

Even with Jello brain.

That is my only super-power for predicting these days. All other bets are off.

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.”

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.

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.

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.

Scrabble in our family is more than a pastime. It’s a social ritual, an escape, and sometimes a ruthless, competitive sport.

So I set up the Scrabble game, trying to position the board on an ottoman in front of Bette’s chair as she was too weak to sit at a table.  The first bad sign started before the game began — Bette kept dropping the tiles on the floor, not being able to place them on the tray. I helped her get them settled.  She had drawn an “E”  and I an “M” so she went first.

It took her a long time to make a word. “What’s wrong with my brain,” she kept saying in frustration.

“Maybe we shouldn’t play today.  It’s afternoon and you’re usually really tired around this time. Why push it,” I offered.

“No, I am going to do this. I need to do this,” Bette stated.

After about 10 minutes, she made her word: RRRTOE.

“Um, Mom, what’s that word?”

“It’s reroute. Isn’t it? Oh what’s happening to me?”

Bette started to get a bit agitated and frightened. The cancer in her brain was going haywire in new ways.

I put the game away, got her some anti-anxiety medicine and we sat quietly.  No spoken words would help. We both knew this was bad, a new symptom messing with her mind.  After a few minutes I turned on “Oprah,” which was part of the afternoon routine. We didn’t watch the program as much as let it calm down the unsettling recognition that terminal cancer wreaks havoc. It’s both unpredictable and unkind.

That night I lay in bed thinking about REROUTE, the word Bette had wanted to make. Her life was being rerouted and she didn’t like where it was going. In her weak state she couldn’t scream, pound a wall or run out of the house to take out her anger on the world and this terminal illness.

But she could mangle the word that was scrabbling her life.

We sat on a stretcher in the ER basement hallway of Mass General Hospital with the fluorescent lights making sounds a lot like those cheap bug catchers zapping mosquitoes.  It was  1:30 a.m., Bette had just been told that she had terminal brain cancer, and she was waiting for a bed in the neurosurgery ward to open up.

“We can do this,” she said to me. “It won’t be easy but we can.”  I believed her, as I always believed my mother when she was convinced something was possible when others didn’t. It was a pattern of our lives.

In this case “do” meant that Bette would do everything in her power to help us help her in these final months.  She would do for us, and we for her.

Bette’s belief that we “can do this” was like her belief that if you know how to swim you’ll be fine even when you swim too far out and the current starts pulling.

My father would sit on the beach worrying that my  mother was swimming too far out into the ocean. She paid him no attention, believing in her soul that there was nothing to worry about. Worse case you turn over and float on your back, letting the buoyancy and goodness of the salt water guide you back.

There were times during Bette’s illness when she or we, her loyal but often bumbling caretakers, would stumble into depression, guilt, frustration or exhaustion. (And sometimes all at the same time.) One of us would often say to the other, “We can do this.”

That phrase became like one of those Styrofoam  swimming noodles that kids use  in deep water. It doesn’t look like a float. It’s not sturdy and it’s usually a crazy fluorescent color like lime green. Nothing that conveys  durability or safety. But those noodles give you a weird kind of support. You still have to use your arms to paddle and kick your feet to get back to the beach. But that little piece of Styrofoam, like the “we can do this” mantra, is a flimsy reassurance that gets you past danger, over fear, and through exhaustion.

My father really believed that Bette would die from swimming too far out.  He would be suprised to learn that she’s trying to get to the end by holding onto a noodle.

She can do it. And we caretakers can too.

Last week Joann came down and brought this photo of all the neighborhood kids eating watermelon in our backyard in the summer of 1964.

The photo got Bette and Joann to talking about all those “kids” and remembering what it was like on Newport St., where the families were big, the houses small, and money was tight.   But somehow life was OK.  In fact, Bette says those were some of the happiest days in her life.

All the neighborhood mothers seemed united. The rules for the neighborhood kids were the rules, like somehow the parents had gotten together and made a pact, written a special code of conduct for that one block of that one street. Values, punishment and rewards seemed consistent from family to family.  Talk about a tribe.

Yet those same parents sure acted like kids, turning cold, unfinished basements into party spaces. Staying up late drinking beer and playing bridge on Friday nights. And let’s not forget that one father who put firecrackers in an outhouse during a summer vacation when we all migrated from Boston to NH. Sometimes we kids felt like the parents, yet we didn’t know what the rules were suppose to be.  So we just ran wild too.

On weeknights the mothers often were out the door as soon as fathers were home and kids were fed. I remember my mother taking evening sewing classes and making us such beautiful outfits. The hounds tooth skirt, coat and matching hat for Easter was one of my favs.  We couldn’t afford Filene’s but Bette made us originals.

See the 1964 watermelon photo has been good for Bette and all of us.

A good photograph is a wonderful distraction. It takes you somewhere else, far from the ‘mom-is-dying” reality. Photographs trigger all kinds of memories, mostly good, some not so good, but now is the time to talk about those too. Tick tock.

So forget about baking brownies. Dig through those old photo albums and bring one really great picture.

Walks help.  But music helps more.  Some days the music allows me to wallow in my lostness while driving alone. The brooding is so indulgent and I couldn’t do it without the music. Other days my “cancer caregiver” soundtrack makes me feel strong and courageous and oh so positive. Bring it on, I can handle it.

Social workers advise caregivers to make sure they take care of themselves. Here’s the soundtrack that’s caring for me:

• Mercy Angel by Brian Blade
• And So It Goes by Bill Joel
• Don’t Give Up by Kate Bush and Peter Gabriel
• Trouble by Cat Stevens
• Tenderly by Duke Ellington
• Stay by Jackson Browne
• Beauty Mark by Rufus Wainwright
• The Way by Neil Young
• Wholy Holy by Marvin Gaye
• I Will Survive by Gloria Gaynor
• The Surest Things Can Change by Gino Vannelli
• Reach Out and I’ll Be There by The Four Tops
• Friends by Elton John
• A Song for You by Donny Hathaway
• We Can’t Be Someone Else by Arling & Cameron
• Angel by Aretha Franklin
• You Get What You Give by New Radicals