be the noodle
fifty ways to be a compassionate, courageous, crazy-good caregiver
lois e. kelly
Published by World Audience, Inc.
(www.worldaudience.org)
303 Park Avenue South, Suite 1440
New York, NY 10010-3657
Phone (646) 620-7406; Fax (646) 620-7406
ISBN 978-1-935444-69-5
© 2010, Lois Kelly
Cover design by Stress Limit Design
World Audience (www.worldaudience.org) is a global consortium of artists and writers, producing quality books and the literary journal Audience.
table of contents
introduction: caregivers need an adventure guide……….…...…..7
I. wham! bam! welcome to the caregiver club, ma’am……..…9
swimming too far out……………………....………....….11
advocating for martinis…………………………...….…..14
private benjamin reporting for duty…………………..….17
enough with the banana bread………………………...…19
did you hear about boo boo’s mother-in-law’s next-door neighbor’s cousin?…………………………………….....21
tea but no sympathy…………………………...……....…23
frustration! 10 things the doctors won’t tell you…….....…25
your valet is here to serve you…………………….…...…27
i want to hold your hand………………………….…..….29
she’s got the power………………………………...…….31
the joy of cards and notes………………………….…….33
denial is a bad-ass energy vampire……………………….35
which house will they buy? jell-o brain knows……....……37
photo distractions……………………………….…….....39
thelma and louise hit the road, again……………..…....…41
the caregiver soundtrack………………………...……….42
just being there…………………………………..……....44
there will be angry words………………………….…..…45
do you hear the peepers?…………………………...……47
small escapes with emma and dustin……………….…….49
what’s your paul newman solution?………………........…51
managing visits: time’s up, sister…………………...……53
dying to help: assign people what they’re good at………..55
five things that really piss off caregivers…………...……..57
sick humor………………………………………..…..….59
II. conflict and crisis: when the wild, wicked and weird start hitting the fan………………………………………………..…61
respecting otherworldly signs…………...………………..62
foul moods…………………………………………..…..63
wise woman worriers go bananas……………………..….65
hesitating on hosp-ice………………………………..…..68
nein on 911………………………….……………….….71
scared shitless and finding grace……………………...…73
don’t forget your kids……………………………….…..75
RRRTEO: the last word……………………………..…..78
big ‘C’ and Little ‘c’ courage………………………….….80
share everything……………………………….……..…..82
doubt is a devil…………………………………...…...….86
more thankfulness, less hope………………………….…88
bodily malfunctions and other shit…………..………...…90
morphine and moral dilemmas…………………….....…..92
grab the furlough……………………………………...…95
hurry up and die……………………………………..…..97
tend to the details…………………………………..…..100
III. being laid off: saying good-bye to the hardest job you never wanted………………………………………..………....103
mother told us they’d be days like this………………......104
dew vs. fog, sadness vs. grief…………………..………..106
be nice to the parrots………………………..………….107
10 tips for writing a killer eulogy……………………......109
instructions for the orphans……………….....…………112
ashes to ashes, dust to joy…………………....…………115
writing down your grief…………………………….…..117
those competitive kennedys……………………….……121
about the author……………………………………..……..…123
notes…………………………………………………..……….124
In memory of Elizabeth (Bette) Kelly
Everything is possible in a whatever world.
In honor of my remarkable family
Together we’re extraordinary. Except for the singing thing.
This story belongs to all of us.
introduction
caregivers need an adventure guide
This morning approximately 50 million people, mostly women, woke up to a job they never wanted and have no training for – caring for a loved one who is dying.
This care giving adventure has no travel guide. No instructions are provided 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 gut wrenching, like not being able to call 911 during a crisis once you sign up with hospice and struggling to be kind and helpful when you feel like a sleepless shrew, to the mundane, like dealing with too many banana breads from well wishers and advocating for patient martinis with the oncologist.
Be The Noodle is a caregiver’s adventure guide, based on my wild, wondrous and life changing journey helping my mother die at home. A lot of people have said, “Why write about something so depressing?” The answer is 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. So while this is about dying, it’s also about possibilities.
An adventure is defined as an experience that can be both terrifying and inspiring because you enter into a flow that is like nothing you’ve ever experienced before. Helping someone die can be one of life’s greatest adventures.
The 50 lessons in this book will help you navigate the adventure and become a compassionate, crazy-good caregiver, one of the most courageous jobs you never wanted.
part I
wham! bam! welcome to the caregiver club, ma’am
swimming too far out
My mother and I are sitting on a stretcher in the basement hallway of Mass General Hospital. Our winter coats are piled in a heap next to us. It’s 12:30 in the morning, dark and frigid outside, but in the bowels of this giant Boston hospital it is bright, hot and chaotic.
The fluorescent overhead lights are loud, making a buzzing sound like those annoying bug zappers you hear in the summer. The woman on the gurney across the hall is telling the emergency room physician that she has no friends or family in the United States. Just her boyfriend, who earlier in the day broke her neck and nose. Next to us an elderly woman with gnarly hands and green eyes moans alone.
A camera crew from ABC-TV is dodging the incoming patients, looking for people to interview for a documentary on urban hospitals.
“How about us,” asks my mother Bette, as in Bette Davis. “We’ve got a good story now.” They ignore us, two middle-class, nicely dressed women laughing and talking amid so much human drama.
Ninety minutes ago the doctors told Bette that the headaches and vision problems she’s been having are cancer. In fact, her head is loaded with malignant tumors. Not one, not two, but many. Next stop: the neuro-oncology ward for more questions, more tests, more experts. The only certain thing is that Bette’s long-term prognosis is not good.
As we sit waiting for a hospital room to open up Bette turns to me and says, “We can do this. It won’t be easy but we can. I know we can.”
Bette has decided that she doesn’t want to spend the rest of her life in hospitals or be sick any more than is likely to eventually happen.
“I’ll be open to what the specialists have to say tomorrow,” she says. “But what I really want is to go home and live at my little house and walk the beach as much as I can. I don’t want to live the rest of my life sick from treatments to prolong my life for who knows how long. I know you all will help me do this.”
In this case “do,” meant that Bette would do everything in her power to help us help her. But no hospitals. No live-in medical help. No extraordinary measures. Just living at home as comfortably as possible, cared for by family instead of medical clinicians. (This was not the time to tell her I couldn’t even help my son when he got sick to his stomach; how the heck was I going to be able to do this cancer thing?)
I believed Bette that early morning in the hospital basement as I have always believed my mother when she was convinced something was possible. It was a pattern of our lives.
Bette’s belief that “we can do this” was like her unwavering 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 late father would sit on the beach worrying as Bette swam out into the ocean. What if she got a cramp? Got caught in a strong current? Who could save her then?
“Why can’t she stay closer in or use one of those swimming noodles like other people who go far out,” he’d ask us as we watched Bette swim further and further out to the horizon.
My father was referring to the Styrofoam swimming noodles that you see littered all over the beach in hard-to-miss fluorescent green, yellow and purple colors. Those Styrofoam swimming noodles don’t look sturdy or safe, but they give you a weird kind of support even though you still have use your arms and legs.
Bette paid her husband no attention, believing in her soul that there was nothing to worry about when you’re swimming. Worse case you turn over and float on your back, letting the buoyancy and goodness of the salt water guide you back to shore. You don’t need silly little children’s noodles to help you swim, especially in the ocean.
But Bette, so independent and headstrong throughout her life, already knew that this final stage would not be an easy swim. Cancer currents are filled with rip tides, sandbars, the occasional shark, and way too many jellyfish lurking in the seaweed. She would have to hold on to a noodle. And that noodle would be her family and friends, helping her stay buoyant despite unpredictable currents, pulling her to safety when she could no longer paddle.
My father really believed that Bette would die from swimming too far out by herself. Not from cancer. He would have been surprised to learn that Bette finally agreed to hold on to a noodle.
caregiver lesson #1
be the noodle.
Carer
advocating for martinis
We were in a rush and feeling overwhelmed and disorganized that Thursday morning at Mass General Hospital.
It had been six days since Bette had had major neurosurgery to remove the largest of her brain tumors, and less than 24 hours since she learned that the real source of her cancer was in her lungs, from which the cancer had spread to her brain. We had thought the cancer had been just those six or ten malignant brain tumors and that surgery had removed the biggest of those tumors, buying time. What now?
Well, the most immediate “what now” was the nurse announcing that my mother was being discharged. She could go home.
“Today? With all these staples in my head?” Bette asked. (There were 56 of those suckers in the back of her head, crusted with dried blood, holding her skull together, still at great risk of infection.)
“Yes, now. Do you have someone who can drive you to the Cape?”
Bette had no clothes, but I had a car. We were making a break. Getting her out of Sickville to her home near the beach might just be the best possible medicine at this point.
We figured out how to wrap her up in blankets over those flimsy little hospital johnnies, and decided that not having shoes wasn’t going to be an issue. The hospital socks would keep her feet warm. I’d pull the car up to the hospital door and we’d get help getting her in the car, avoiding the early March slush.
I called my uncle to ask him to turn on the heat at Mum’s house. The nurse came in with pages of post-op instructions; lists of medications, a schedule for follow up visits. It was overwhelming.
Then my sister Nancy, a nurse practitioner, arrived, followed by the neurosurgeon, who wanted to review all the instructions with Bette.
Nancy was able to help my mother understand the implications of what the doctor was explaining, and reassured us that she’d be down the Cape the next day to help sort out all the medications.
“Is there anything else,” the neurosurgeon asked.
“Is it alright for Bette to have a martini,” asked Nancy.
“A martini?”
“Yes,” said Nancy. “My mother has always enjoyed a martini at night before dinner. Can she drink a martini?”
“Well, er, ah, I don’t know. I guess it can’t do any harm,” replied the doctor.
With that my mother thanked the surgeon for all he had done for her, got in the wheelchair, and away we went. Two fugitives speeding down Boston’s southeast expressway before rush hour, feeling like Thelma and Louise.
When we got to my mother’s small town early that evening we stopped at the pharmacy to get the drugs, the grocery store to get gourmet take out, and then scooted to the liquor store to get some vermouth and vodka.
At home that night Bette was elated. She was home, able to sleep in her own bed, her own quiet bedroom. No doctors, no tests, no other sick people. She lifted up her martini glass and toasted, “To Home.”
I lifted my beer and toasted. “To Nancy, who knows all the right medical questions to ask.”
Now that’s a patient advocate.
caregiver lesson #2
don’t be afraid to ask the stupid questions that can make a person happy. like martinis.
private benjamin reporting for caregiver duty
I’ve always hated the war metaphor used in sports and business.
What’s the company’s mission and target? Seize the opportunity. Defend your position. Every battle is won before it is fought. Capture market share. Establish a beachhead and expand. Focus on the blocking and tackling. 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 cubicles, falls to the floor, and starts running, crouched down low like they’re avoiding an ambush.
No one is going to die if you lose a football game or close a business deal.
But becoming a caregiver for someone with a terminal illness deserves the war metaphor. This really 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 like Private Judy Benjamin, the Goldie Hawn character in the 1980 movie Private Benjamin. Judy Benjamin is a spoiled dingbat who admits she “is 29 years-old and trained to do nothing.”
We become caregivers thinking that we can do this. How hard could it be? And like Private Benjamin, we know we’re in trouble on the very first day when we’re thrown into combat without any basic training, operating new equipment, taking orders from higher-ups, following new rules, and battling sleepless nights and days of looking like hell because there’s just no time to take care of ourselves.
And, of course, there’s the latrine duty, KP, guard duty and all the other nasty, repetitious assignments that you just have to be able to double down and do 100 percent.
There’s really no escape. You’re on duty.
There’s no tough drill sergeant to tell you what to do when it comes to helping someone with a serious illness. You volunteered for an assignment that has no rules, regulations or training. You, like Judy Benjamin, wonder, “What the heck have I committed to? I have no idea what I’m doing.”
That’s how I feel, having volunteered to live during the week with my mother for the duration. I could do this because my marketing consulting work gave me more flexibility than family members with 9-to-5 type jobs.
But could I really do this?
The army recruiter tells Private Benjamin that she can be “all that she can be.”
Ditto for being drafted as a caregiver.
caregiver lesson #3
no special skills necessary. you’ll learn on the job.
enough with the banana bread
Birthdays: cake
New Year’s Eve: champagne
Terminal cancer diagnosis: banana bread?!
OK, I know this sounds ungrateful. But hold off on the banana bread. Sick people rarely have a sweet tooth and the caregiver rarely can eat all those banana breads.
The week Bette got home from Mass General Hospital, people kept stopping by the house and leaving banana bread. We must have had nine loaves by the end of the week, and three big plates of brownies. It seemed like the banana breads were reproducing. Every morning there would be more. I came down to the kitchen, made coffee, and pondered, “What should I do with the banana bread?”
I started freezing it. But then there was no room in the freezer for real food.
Clearly stressed about the multiplying banana breads and feeling guilty about throwing kind intentions into the trash, I asked one of my mother’s friends, “Why are people giving us so much banana bread?”
“It’s so that you have something on hand to give people when people visit,” she explained.
“But Bette is too sick for visitors. I’m the only one here.”
“Oh.”
After people die, there are a lot of people around who need to be fed. While people are dying at home and not wanting any visitors, there’s not much need for banana bread.
A better option would be to ask the caregiver what food, from what local stores would be appreciated. Really, it’s OK to ask. During these days with my mother, the last thing I want to do is to grocery shop and cook. But I need to make sure she eats, and I’m always hungry.
To be able to have the squash and steak tips from a favorite restaurant is heaven. Better yet, put us on a steady diet of deliveries from the local caterer. Even better, instead of saying, “Let me know how I can help,” offer to organize friends to drop off home cooked meals on a schedule.
The ill person needs to eat to keep some strength and be able to tolerate medications; the caregiver needs to eat to stay healthy to be able to care.
Just not banana bread.
caregiver lesson #4
tell all those generous friends and neighbors what kind of food you would appreciate. otherwise, beware the banana bread bombardment.
boo boo's mother-in-law's next-door neighbor's cousin had cancer too
From Nancy Kelly
When it came time to spread the news of my mother's illness to my co-workers and friends, I wasn't sure what to say, and how to say it, and didn't want the spotlight on me.
I shouldn't have been concerned. Everyone knows someone who knows someone who had cancer or some other terminal illness.
You share your news and people say, "You know, Boo Boo's mother-in-law's next door neighbor's cousin had lung cancer and went to a hospital and was wicked sick so she got chemotherapy that made her bald, then died, and her daughter was wicked exhausted so be careful and make sure you take care of yourself."
This was not easy to hear. I didn't care about Boo Boo. Still don't. Never will.
One person listened to me – and listened hard. Then kind words of advice followed and I think of them when I sit quietly with my mother. "Ask your mother questions. Find out as much as you can about her. Ask what her life has been like."
Everyone's story and experience is different. Listen. Don't talk.
That’s what people on the front lines need the most.
caregiver lesson #5
avoid the chatty cathy know-it-alls; seek out those who will simply listen with you for a while.
tea but no sympathy
Getting the news that someone you love has an incurable disease is like being shot into a bizarre parallel universe. First you keep trying to make sense of it all. How could it be the world I knew no longer exists? What will life be without the person I love so much?
Just as you’re trying to make sense of this new life that you never intended and never wanted, you get slammed by well-intentioned people smothering you and your loved one 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?”