This annual rite means so much to me and I’d never shared it with Mum. The first and last time would be tonight. I hope she likes it as much as I do.

After finishing dinner, I brought our trays into the kitchen and cleaned up while Bette wrapped herself in a blanket close to the fire and watched “Jeopardy.”  Dark already.  I loaded up the dishwasher and took the garbage outside. I stopped just outside the door.

Could it be?  I tossed the garbage into the composting bin and walked to the west side of the yard, closer to the marsh a few streets over.

Yes!

I rushed back in and helped Bette push her swollen feet into her green rubber garden shoes and get into her winter coat.

“I just knew it would be today,” I said. “It’s always the last week in March without fail.”

I wrapped my arm in Mum’s and out we went to the deck, arm in arm. It was so dark. Few stars and no moon. No lights on in any of neighbor’s houses. Today it reached 50 degrees but most people are still in Florida.

Missing this.

“Do you hear them?” I asked. Gingerly we walked through the backyard, closer to the marsh.

Peep. Peep. Peep, sang the tree frog peepers in their song of spring joy. The Hallelujah chorus signals the Yuletide season and the Peepers are the official welcoming chorus of spring.

Their high-pitched little voices tell us that the harshness and dark of New England winter are over.  New beginnings and possibilities are coming. Rejoice. Be grateful.

Bette and I stand there listening. I know this will not be a joyful spring. The nurse’s note this week said, “Declining rapidly.”

But still, standing there with my Mum I sensed joy. Bette was always giving that to us, even when she had every excuse to be selfish. Like tonight.

We walked back into the house and cranked up the heat.

“It won’t be long now,” Bette said. I hoped she meant the spring.

kidju4mzab

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.

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.

“Your dog died,” said the brother.

“What?!!!,” replied the other brother. “You’re not supposed to just come out and tell me like that.  The first night I call you’re supposed to say the dog is on the roof. The next time I call  you’re supposed to  tell me that the dog fell off the roof. The third night I call you tell me that the dog died. Got it?

“Got it.”

“Okay, good,” said the brother on vacation. “Ill call you tomorrow.”

The next day the vacationing brother calls and asks his brother, “So how is everything going?”

“Good,” says his brother, trying to make pleasant chit chat.

“And how is mom?”

“She’s on the roof.”

Today a work crew swooped in to re-roof the house behind my mother’s, while she nears death. My sisters and I looked at the roofers and then looked at each other.

“Mom’s almost on the roof,” we all said practically in unison, and laughed until we really cried.

I’m sitting here on Cape Cod and the rain is blowing sideways, straight ways and relentlessly. It’s May but the day is dark and so is Bette’s mood.  Foul all around. And not nice foul, like foul balls in Fenway Park on a hot summer night.

The bickering during the last 24 hours has been proportionate to what I see as the evil cancer soldiers marching more aggressively through Bette’s body, looking for new places to set camp and making a mess wherever they go. The more territory they claim this week, the more irritated she becomes. Rightly so. But still…

Though she can barely stay awake more than a few hours and the cancer has spread to her brain Bette boldly stated yesterday that she wanted to see the oncologist and make sure it was OK to start driving.

“Drive?” I asked incredulously. “How could you even think about that. Look at the state you’re in. You could hurt someone driving.”

“I don’t want to discuss it with you. But I am going to talk to the doctor about it. Now call the auto repair shop and get the car back today.”

“Why today? I have my car.”

“I want the car and I want to see the doctor about driving.”

Oy.

Later it was about the trash.

“Why are you using those trash bags,” asked Bette. “Just use these  grocery bags.”

“But those are too small. They don’t hold enough and they’re flimsy,” I shot back.

“You’re being ridiculous. Use these.”

Today Bette is laid low, unable to do much at all but sleep. The foul mood has ebbed. I suppose yesterday’s irritation was all about fighting the new cancer soliders. Today she’s accepting them.

It’s still raining.

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

When people see Bette, they are shocked at how different she looks and she can see that shock in their faces. She can deal with that.

What’s harder to deal with is when people say, “You look good.”

When Bette hears this she brings up one of her deceased husband’s favorite jokes.

“You know what they say. There are three stages of life. Youth, middle age, and ‘you look good.’”

Then she and we laugh off some of the reality.