50 ways to become a crazy-good caregiver

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: “Dying To Help: 50 Ways to Be a Courageous, Compassionate, Crazy-Good Caregiver.”

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

Do you hear the peepers?

“I think it’s going to be tonight. It’s my favorite night of the year. Do you think you’ll be able to stay awake for it?” I asked Bette, acting more like a five-year-old trying to talk her mother into going to a drive-in movie.

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

Hurry up and die

Here’s the dirty little secret we caregivers share. A shameful secret that few talk about.

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.

Which house will they buy? Jello brain knows

Something happens to your brain during this journey.  The brain goes from being a reliable Energizer battery to red Jello with pieces of canned pears jiggling all around.

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.

Big “C” and small “c” caregiver courage

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

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?

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

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

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

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

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.

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.

10 tips for writing a killer eulogy

How to write a great eulogy? Here are some tips based on my experience as a professional speechwriter, collector of great eulogies (see William Safire’s Lend Me Your Ears: Great Speeches in History), and grieving daughter who last week wrote one for her mother. (A copy of the eulogy is below.)

1. Celebrate: try to write a eulogy that celebrates the person’s life and uplifts and inspires people. When people leave a service they want to feel good about the person they loved or cared for; they want comforting words and joyful memories that will help them bear their sadness in the days to come.
2. Tell stories, share what you learned: rather than simply reading a list of the person’s life history and accomplishments, talk about what they meant to you and why. Or share a story that captures what the person was all about.  Stories are interesting, memorable, and are much easier to talk about, especially when you’re nervous. Or share three things that you learned from the person.
3. Open with a declarative sentence or anecdote that gets attention. Paying tribute to his nephew John F. Kennedy, Jr.  Sen. Ted Kennedy opened with: “Once, when they asked John what he would do if he went into politics and was elected president, he said: “I guess the first thing is to call up Uncle Teddy and gloat.” I loved that. It was so like his father.”
4. Be yourself: don’t worry that you don’t know how to write or speak before a crowd. Just be yourself and write from your heart, not your head.  Use short sentences, simple words, much like how you speak. (This will help you speak what you write, too.)  Genuine and maybe a little rough at the edges always wins out over overly-polished.
5. Thank people: thank people for their help, especially important if the recently deceased was ill for some period.
6. Have a beginning, middle and end: a good eulogy, like any good speech, starts with a point, fills in the middle with stories and anecdotes supporting that point, and concludes by reminding people of the point.
7. Find a metaphor: sometimes using a metaphor helps to ground the eulogy. Try to find one that is especially meaningful to the deceased. See how I used the metaphor of a Styrofoam swimming noodle in the eulogy for my mother. (below)
8. Keep it short: unless you’re an amazing speaker, keep the eulogy to under five minutes. As a society we’re used to 15 and 30 second commercials, so even if your remarks only take a couple of minutes, that’s fine. It’s not about length, but celebrating the person’s life.  Nothing wrong with short and sweet — as long as it isn’t saccharine.
9. Practice speaking: delivery is as important as the words. Practice reading the eulogy out loud.  If some sentences seem too long, shorten them. If some words trip you up, eliminate them.
10. Print out in large type: Print out your speech in large type, at least 14 point font, and make it double spaced. This will help you read it. If you can give the eulogy without reading, do it. But for most of us — especially when we feel so vulnerable and emotional — reading is a better option.  And if you’ve practiced, it will sound good.

Eulogy for Elizabeth Kelly

MESSAGE OF THANKS: Lois (3 minutes)

On the night of Feb. 24 when Bette learned that she had terminal cancer, she told us, “We can do this. It won’t be easy but we can.”

We believed her, as we always believed my mother when she was convinced something was possible. 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.

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.

Our father would sit on the beach worrying that Bette 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 Mum’s illness when she or we would stumble into depression, guilt, frustration or exhaustion. (And sometimes all at the same time.) Mom would reassure us, “We can do this.”

And thanks to everyone here today we did help Bette enjoy the final weeks at her Popponesset home.

All of us together became like one of those Styrofoam swimming noodles. It doesn’t look sturdy or safe, but those noodles give you a weird kind of support. You still have to use your arms to paddle and kick your feet, but that little piece of Styrofoam, gets you past danger, over fear, through exhaustion, and back to the beach.

My father really believed that Bette would die from swimming too far out by herself. He would be surprised to learn that Bette finally held on to a noodle with all of us with her.  That noodle was powered with all the prayers, cards, calls, banana breads and good wishes from you, her dear friends and family.

Thank you so very much. You meant the world to Bette, and to us.

RENIE

Thank you all for being here.  We are deeply saddened by the loss of our mother, aunt, sister, cousin, and friend.  Caring about others was my mother’s ROLE AND JOY in life.
She cared deeply about each and every one of us in this room.  If you look around you will see that that was no small task. She loved life, and her large family and circle of friends kept her energized.

Speaking of energy– it was 46 years ago this week that she brought her youngest child, my brother Jim, home from the hospital after his birth.  She came home to 5 other children – a ONE, TWO, THREE, FIVE and SEVEN year old.  One of my siblings asked her recently:  How did you do that?!  She replied: I don’t know, it was a MIRACLE

During her 10 years in Popponesset my mother filed her weeks and days PURPOSEFULLY with:

• Bridge club
• Book club
• Women’s club – membership committee
• Fuel assistance volunteer duties at the senior center
• Occasional meals for the men’s homeless shelter in Hyannis
• Not to mention the Girl’s Game night on Monday
• And trips to the theater in Providence and Falmouth

Dad would often say:  Geeze Bette, would you just sit down!

If that short list wasn’t enough to keep her occupied, she had what she called “a little job”.
She worked one or two days a month driving clients whom she called her “Miss Daisy’s” to doctor’s appointments. Often she would spend the day traveling to Boston and back.
Although she was paid, she really didn’t consider it a job.  Mum developed friendships with several lovely ladies.  These caring friendships, like all of her relationships were very meaningful and fulfilling to her.
My mother was the most caring person I’ve known, and certainly a role model for all of us.  By doing things for others, without expecting anything in return, she helped us understand the most important things in life.

The last thing I would like to mention is Mum’s love for the beach.  As you heard from Lois she loved the water. Having family members spend a summer day with her on Popponesset Beach was a highlight, and truly pleasure for her.

I want to share a quote from Isak Dineson that she cut out of the newspaper shortly after my father died.  It’s been posted front and center on her refrigerator for 5-long years

The cure for anything is: Salt-water, sweat, tears or the sea

So if you’re feeling sad, alone, or have a free moment please take a walk on the beach (any beach will do).  When you’re there take in all the wonderful friendships that you have had in you life and be glad.

Thank you.

My mother told us they’d be days like these

Four weeks ago my mother told us that things would get bad as she neared the final days of her life.

As always, Bette knew what was ahead and tried to prepare her kids. Once a mother, always a mother, even when your “kids” are middle-aged adults.

“You need you to know that it will be very hard for you caring for me. Harder than anything you can imagine.”

“Mom, we’ll be fine, we’ll be OK,” I said.

“You won’t be OK. But as you’re going through those final days know that I will be OK. I’ll be so heavily medicated that I won’t be aware of the pain or any of the other awful physical things that go along with the very end.”

As I lay outside Bette’s bedroom all day on Friday listening to her gasping and choking on the fluid in her lungs, I remembered what she said. As I tried to put the morphine into her cheek, only to have her choke on it because she was losing the ability to swallow, I remembered what she said.

And when Bette stopped breathing altogether on Saturday afternoon, I remembered my mother told us that  there would be a day like this when  “the adventure would be over.”

Psychologists say adventurous experiences can be negative, like fear, and positive, like being immersed in the flow.  There’s nothing more adventurous than helping someone you love die. There’s no day sadder than when they do.

RRRTEO: The last word

It was a dreary Thursday and Bette was frustrated. Her legs were swelling and she hadn’t been out of the house in two weeks.  “I’m sick of lying around. I need to do something. Let’s play Scrabble.”

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.

Swimming too far out

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.

Denial is a drag

Playing “let’s pretend” is a quaint game for children.  ” Now, you pretend that you’re an astronaut caught in space, and I’m a teacher trying to save you….”

But as adults, playing “pretend” in our heads can drag down the terminally ill person. Intentions that “things might be much better in a couple of months” may help you cope with your sadness, but too often good intentions are cloaked in denial, and that denial is a really bad-ass energy vampire. Maybe a bad-ass energy vampire swarm, sucking the energy from the dying person who has to once again explain the real deal.

One of Bette’s friends explained that they were moving the June investment club meeting halfway between  Boston and the Cape to make it easier for Bette to attend.

Bette was astounded. Truly.  She had told her friend how ill she was, dying really.  Could she have been more frank? What’s with the denial?

“I really don’t think I’ll be in any shape to go,” said Bette.

“Well maybe instead of dinner we could change it to lunch if that would be easier,”  said her friend.

“Really, don’t plan around me. I’m in no condition to be planning eight weeks out,” said Bette, exhausted from having to again remind people how very sick she is.

When in doubt with a terminally ill person, look at him or her. I mean really take a close look. Is their speech slower than usual? What about their  body language — perhaps more stooped in the shoulders? Are they walking more cautiously and slowly? And, the clothes, hanging off a bit? Do they eat much?  What about the eyelids? Probably a bit drooped.

When you hear someone is very ill, be more aware, and then respect what you see. Even more, respect what they say.

Instead of presuming, ask gently, “Do you think you might be up for going to an investment meeting in the coming weeks?”

Then listen. The terminally ill person will tell you whether she thinks it’s possible, or to please count her out.

Flash forward from young kids’ playing pretend to teenagers denying what they were really up to while you were out on Saturday night. Ah, you can sniff the denial. And it’s making you angry, really angry.

Kids playing pretend was easy as a parent. Denial often rips our guts out. Never mind our hearts.

That’s how a terminally ill person feels when we don’t accept her new circumstances.

Doubt

“I’ve always believed that there is something after this life. Now I don’t know. And it’s making me scared,” said Bette.

“When living my life I guess I just unthinkingly accepted religious beliefs about the concepts of heaven, everlasting souls, the “white light,” joining loved ones who have died before us,” mused Bette.  Like saying prayers these beliefs are ingrained from a lifetime of worship, yet rarely do we think about the words behind the prayers or interrogate the meaning of the beliefs.

But when you know you’re going to die soon, you think about those concepts – and many are hard to believe.   There’s no proof, after all.  Just conjecture. Is anyone really sure that Jesus, Muhammad, Budda, Joseph Smith, Jr., Confucius, Zoroaster or any other holy men had the inside skinny on what really happens after you die?

Bette talked about this fear and her doubts last night, coming to no conclusions, simply acknowledging that as the cancer weakens her body, so does her belief about afterlife.

Then today the retired Monsignor of her church, who she traveled with, who helped her through her grief after her husband died, and who she hasn’t talked with since his retirement a few years ago, called out of the blue.

“I heard you were sick,” he said. “You must be scared.”

“I am,’ she said.

“It’s going to be alright. You’ll be fine,” he said.

Monsignor Tosti’s call comforted Bette and provided much needed reassurance that whatever happens, she will be fine.  It didn’t resolve her doubts about belief, but it did strengthen her faith.

(Note: this discussion from last week when Bette still alert.)

Mom’s on the roof: more sick humor

A favorite family joke is about the man who went on vacation and left his dog with his brother. While away he called his brother to ask about his dog.

“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.

Scared shitless, and finding grace

Now that’s a terrible heading for this story. (The first part, anyway.) Maybe I should have titled it, “acute stress attack” or “physiology and psychology of the stress response.”  Whatever you call it, when the dying person you love goes into their first dangerous “oh-my-God-I can’t breath” attack, you, the caregiver, are put to The First Big Test. (Mmm, maybe that’s a better title).

Bette was turning red then purple as she coughed and tried to get a breath. I ran to the refrigerator and opened the morphine that hospice had provided, figuring out  how to put the plunger in, turn the bottle upside down, take the plunger out to the right dose, and oh dear God, hope that I wouldn’t spill the morphine all over the place because we’re probably going to need much more of this drug.

Bette was trying to give instructions but couldn’t talk for lack of air. I squeezed the morphine under her tongue. She gagged at the taste, still fighting for air. I propped some pillows and helped her sit up, hoping that position would make her more comfortable. Then I called hospice and left a message, and got Bette a little cranberry juice to help her overcome the taste of the morphine.

Through it all, I stayed calm, talked slowly and reassured Bette that she’d be just fine once the drug kicked in.  I sat on her bed a while as she settled, shaken but able to breath.

Now anyone who knows me knows that I tend to be hyper, overly excited and occasionally manic when I’m stressed.  Not today, though I felt scared through my whole being.  Scared shitless as hardcore Bostonians would say.

But I also felt a spiritual  otherness, being able to love Bette by helping and in doing so finding grace.

Foul moods

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.

You’ve got the power

One thing that so many dying people want is to call their own shots, making decisions on the big things like whether to have surgery, do chemo or what hospice organization to sign up with, to the small things, like whether it’s a good day for visitors or if the screens should be put on the windows.

“I am in charge of me until I can’t be,” stated Bette.  End of conversation. Shades of gray not up for discussion. “I’m an adult, not some child just because I have cancer.”

If there was a soundtrack for the desire to be in control, it would be the 1990’s dance song, “The Power” by Snap!, which has become a cult-like anthem at sporting events.  Imagine if you will that the sick person has the energy to get up and dance. Now cue the music, turning the volume way up when the staccato synthesizers kick in.

I’ve got the power hey yeah heh
I’ve got the power
Oh-oh-oh-oh-oh-oh-oh-oh-oh yeah-eah-eah-eah-eah-eah
I’ve got the power
Oh-oh-oh-oh-oh-oh-oh-oh-oh yeah-eah-eah-eah-eah-eah
Gettin’ kinda heavy

It’s gettin’ it’s gettin’ it’s gettin’ kinda hectic
It’s gettin’ it’s gettin’ it’s gettin’ kinda hectic
It’s gettin’ it’s gettin’ it’s gettin’ kinda hectic
It’s gettin’ it’s gettin’ it’s gettin’ kinda hectic

Now keep that song in your head as situations arise where, as caregiver, you feel strongly about what should be done and the dying person disagrees with you.

I’ve got the power
Oh-oh-oh-oh-oh-oh-oh-oh-oh yeah-eah-eah-eah-eah-eah

Or if doctors, hospice nurses and other professional help meets with the person you love and looks more at you than her, do two things. One, find a different nurse or doctor. Or, encourage the sick person to next time speak up and tell people that that they are making their own decisions.

Even more fun is to download “The Power” for a ringtone and call the phone when people are forgetting who’s in charge.

I’ve got the power
Oh-oh-oh-oh-oh-oh-oh-oh-oh yeah-eah-eah-eah-eah-eah

More thankfulness, less hope

When it comes to dying, people want you to be hopeful. To talk about possibilities, about people who lived much longer than doctors predicted, about miracles.

When I’ve had to have frank sit-downs with family and Bette’s friends to explain her situation, people listen as I cut through all the niceties and tell them that Bette does not have long to live. I also tell them that she’s OK with dying and needs them to be OK with it too.  She’s so thankful for the life she’s had – and for all that you’ve been in her life.

“You’re being awfully negative,” comes the reply. ” You need to have hope and be more positive.”  If this happened once, I’d overlook it. But there’s a pattern.

Why can’t people celebrate thankfulness? Why is that virtue so overlooked when it comes to dying?  What happened to the mantras, “Be thankful for what you have. Be thankful for every day.  Make a list of what you want your obituary to read so you can be thankful that you lived the life you wanted.”

When people are dying hope is overrated, and thankfulness is the goddess to worship.  How great is it when you’re dying to be able to look back on your life and say, “I am so very thankful.”  How joyful is it to hear someone you love express their thankfulness, and for your part in it?

It’s more than joyful. It’s inspiring.  And that’s far more powerful than empty hope.

Tea but no sympathy

Getting the news that you have incurable cancer is like being shot into some sort of bizarre parallel universe.  First you keep trying to make sense of it all. How could it be the world I knew no longer is?  But I have to deal with this new universe because I am still alive. I am me, still.

Just as you’re trying to make sense of this new life that you never intended and never wanted, you get slapped by well intentioned people smothering you with platitudes.

(The definition of platitude is “a pointless, unoriginal or empty comment or statement made as though it were significant or helpful.”)

“I can deal with the cancer,” said Bette, ” but PLEASE spare me the sympathy.  I can’t stand it when people give me these pitying looks, and tell me things like, ‘I know how you must feel. But you have to be strong and hopeful. Sometimes people live much longer than the doctors ever expect.’

“I’m OK with dying, why can’t they be?”

I witnessed one such sympathy encounter.  While my mother’s manners prevent her from ever being rude, I could read her body language and tone, which, if translated, would have gone something like: “Get this boob the hell out of here. She has no idea what it’s like to be told you’re dying. Telling me to “have hope” is so condescendingly stupid and inane.  And she just seems to keep blabbing on and on about nothing, which is exhausting. This is why I’m starting to dread visitors.”

So a few things to avoid:

• I’m so, so sorry. I can’t believe this is happening to someone like you.
• Oh my god, what are you going to do?
• Have you talked with your doctor about homeopathic, alternative medicine treatments? You know there are a lot of options out there that doctors don’t know about.
• This is a time where you must have faith in God.
• You must feel so grateful that your children are nearby.

What is helpful:

• Simply say, “I heard the news.” Then let the ill person respond. She or he will likely direct the conversation towards what is comfortable for them. And remember, this is about them and not about you.
• Pick up on the ill person’s cues. Often I hear my mother say to someone, “Let’s not talk about that.” That’s the request to please, please NOT talk about that topic. Drop it. Avoid it like the plague or the metastatic cancer that it is.

When visiting bring a plant, bring a book, bring some good English tea, but please, no sympathy.

Photo distractions

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.

What’s your cancer caregiver soundtrack?

Some days while caring for my mother I feel lost. Maybe disoriented is a better word.  There’s no predicting how she will be from one day to the next. I fear I’m letting my business colleagues down by spending too much time away from work. And then there’s my husband and 14-year-old son at home, probably eating pasta and no vegetables again for the fourth or seventh time this week.

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

Sick humor

When half your head is scalped from neurosurgery, you’ve been told that your stage IV cancer has spread like wildfire, and your days are numbered, sometimes the best thing to do is take comfort in favorite jokes that are especially relevant.

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.

Respecting otherworldy signs

Part of helping people with this dying process is shutting up and listening. And respecting  dreams, signs, and, who knows, maybe some sort of spirit guides hovering around.

The “who knows” part is important.  I’ve never been one of those touchy-feely, new age kind of people. Logic has been my North Star. But when the dying person shares special dreams or signs,  we must put aside our biases, and honor those signs.   This is their journey and we’re here to help, not judge.

Bette wanted to share  a story, but then stopped and said, “Oh, it’s probably foolishness. I’m too embarrassed to talk about it.”

But clearly she wanted to talk about it.

“The night your father died I felt someone put an arm around my shoulder and give me a hug. I felt the warmth of that arm. It wasn’t like a dream. Today when I was napping that same arm hugged me three times.  Now I don’t feel as scared about what’s going to happen. I know I’m dying and it’s OK.”

And I realized by listening respectfully I made it more OK.

The joy of receiving cards and notes

People who are very ill love receiving cards and notes.  It’s a simple gesture we can all do for those who are dying, whether we’re close to the person or are just work, neighborhood or church acquaintances.

“Have you seen all these cards,” Bette asked me. “It’s just unbelievable. I never knew there were so many people who cared so much about me. Aside from my family, I’m most proud about these cards, these people who have written to me. I just never knew that there were this many people in my life.”

Bette saw a blizzard of cards when people first learned of her terminal cancer prognosis. That’s when we all feel compelled to “do something.”

Another  lesson for me is to keep sending cards. Many days the ill person wants no visitors, is too weak to talk on the phone, but so appreciates opening a new card and receiving a warm “Hi” from a friend.

Tell her how much you love her

Now is the time to tell the dying person how much he or she  has meant to you, how much you have learned from them. This is such a gift. A BIG, BIG gift.

It needn’t be long. Just a short note.

My mother keeps just such a card from her niece Amy on her bedroom bureau, sharing it selectively as it turns on the tears machine when you read it, and some days Bette just can’t handle weepiness.

Dear Aunt Bette,

I am so sad. I can’t imagine what life is going to be without you. My sisters and I have learned so much from you on how to be the best aunt.

You and Uncle Jim have always been such important people in my life and I will always make sure that I care for and love my nieces and nephews the way you and Uncle Jim have done for us. When I remember what you’ve done for me and do the same with my neices and nephews I will smile.

Love you,

Amy

Praying over bag of chemo medicine

The best way to help those who are sick is to just do what they ask us to. My friend Leslie shares this beautiful story about helping a friend with cancer.

The day I took  her to the chemo appointment, I was struck by how direct she was about what she needed for her own health. I will never forget the feeling I had when she asked me to pray with her over her bag of chemo medicine.

I was a little embarrassed because I’m not a big fan of praying in public. But here she was, oblivious to any embarrassment or self-conciousness. She didn’t care what anyone thought. She knew the stakes and was completely focused on doing whatever it took to save her life.

So, of course I agreed to pray with her. We took that bag of chemo and held it together. I don’t know what she prayed for but I begged God to infuse that medicine with love and healing to save her life. In that moment, I saw a woman literally fighting to say on this earth with her children. And so I prayed as hard as I could and kept praying for her everyday.

Until that point, I had imagined that I had a very long, almost infinite, corridor of life ahead of me. I really didn’t give death a thought. There was plenty of time and no urgency.  My dear friend, with so little time left and so much that she wanted to do, reminded me that every single moment of life is precious. She helped to remind me to really, really love every single moment of it.