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

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.

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As the end nears you start wishing the person you love so much would hurry up and die.

I mean how much more can anyone take.  The person you love is no longer conscious much of the day, if at all.   The day is one of tedious tasks– morphine every hour, sitting quietly holding Bette’s hand while she moans and stiffens further into a fetal position, with her right hand becoming more permanently bent, as if that human hand was turning into a puppy paw, asking for a treat.

If she were asking for a treat I imagine her saying,  “Oh, please dear God, take me.  I want to go quickly and with dignity. These daughters of mine now have to put those horrible adult diapers on me.  Such humiliation. Please, I’m begging, take me and spare them having to do this. I don’t want them to remember me this way.”

But Bette no longer talks. She just moans and whimpers.

“Is she in pain,” callers ask.

As the morphine cocktail – four fifths morphine, one-fifth cranberry juice to cut the horrific taste – dribbles from her mouth , I worry that nothing is getting into her system and, yes, there is pain. Hospice says it’s too late for an IV drip; Bette’s veins probably wouldn’t take it.

It’s  9 a.m., noon, 3 p.m., dinner time, 10, 11, two in the morning, four in the morning, the sun is coming up, coffee time, breakfast. More morphine. Change the diaper. Turn Bette over and sponge bathe her. Change the sheets. Cut a clean nightgown up the back so we can more easily get it over her head and change the diaper without causing her too much pain.

More moans. Not wimpy moans like a puppy with its cute paw raised for a treat, but an old dog’s moans, a dog who needs to be put down because he can no longer make it outside to pee. His food goes through him and comes out like sludge. He needs to be carried up the stairs at night, though he mostly stays on newspaper on the kitchen floor.

“Please God, make her die.  How many more days must she suffer? When does it all end so we can live again?  Go to work, sleep all night, be in our own beds?

“Damn, stop it. That’s selfish,” we remind ourselves. Shame. Shame. Shame.

A close friend calls and we remember that while her husband was dying she planned a three week vacation to Hawaii. We were appalled. “How selfish,” we gossiped.

Now we know how beat caregivers become. How much you need something to look forward to. Something where you can plan, control, mark out the calendar dates with certainty.

At the end, I feel like a watcher, not a giver. I am powerless at a time when the best mother in the world lays dying, gurgling and choking on the fluid in her lungs. But not the morphine she so needs.

Please God, hurry up and make Mum die.

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.

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.

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?)