Wednesday, May 25, 2016

Hidden Caregivers--Children Caring for Adults

It's so much more than, "Mommy's Little Helper." In the United States there are thousands of children who are the primary caregiver for a parent or grandparent. These very young caregivers--ages 6 to 16--do more than bring a glass of water--these are children doing primary physical care for an adult. That means bathing, mobility support, feeding and medication delivery and management.

And they need help. But here's the rub: children is positions of medical/physical care can be at risk of a CPS (Child Protective Services) call which would disrupt the family. So what is a teacher, neighbor or clergy member to do?

Find safe ways to get additional help for the family---and look at this fabulous model in Florida's Palm Beach County.

Here's a link to a great article this week by Jane Brody in the New York Times.

Please do share this one with educators, social workers, faith communities. All of us who know the realities of caregiving--and being cared for--can help out.

Here is the link:

Monday, May 16, 2016

The New Anatomy of Cancer--Best New Reading on Cancer Studies

In case you missed it in your reading pile yesterday (Sunday May 15)--the New York Times Magazine published a special report on cancer: some of the new science, research, prognosis estimates, and a wonderful piece by my favorite cancer writer: Siddhartha Mukhergee.

I''m posting the link below to Mukhergee's article called, "Doctors Without Borders" about how treatments are becoming more targeted and more personal. You recall his fabulous book about cancer is, "The Emperor of All Maladies."

This special New York Times Magazine issue is filled with articles about new cancer research, new ideas about cancer's science (the science of cancer is changing) and some powerful caregiver stories too. If you have a hard copy save it for future reference or ask a friend who reads the Times weekly to save this for you.

Great reading. And reading about cancer does matter and does help. It is our cognitive life raft.

Here's the link:

Monday, May 9, 2016

I Can See Clearly Now

“Our deepest wounds are the lens through which we see the world.”—from my journal May 1994

I sing along with the radio: “I can see clearly now, the pain is gone. I can see all obstacles in my way. All of the dark clouds have passed me by. I can see bright, bright sunshiny day.”

That is a song that brings tears to my eyes. It’s a song about recovery and healing. And it’s
been a long journey through so many kinds of healing for me. And so I am aware of how my own worries and wounds distort how I see John’s cancer and how I worry in this relationship.

Many people are afraid of cancer and many caregivers have the ongoing fear that their loved one will get sick, sicker, or die. This is not about turning a molehill into a mountain. This is not about turning a stomachache into cancer. But it is about cancer being really scary and threatening. 

But still, but even with that, how much do I lose my --and our --good life to my worries. At what point does reasonable fear become a greased slide into a truly old belief that I will be abandoned? How much do I assume that the worst things will happen because I am not enough?  How often do I set myself aside and wait for pain and grief to descend --and when they don’t I go and shake the fear tree to bring some fears so that I can have the familiar terror? Even on a good day that takes some sorting out.

This is about woundedness and beliefs. I am a woman of faith and I believe in a Higher Power but these other beliefs are something else. It’s a kind of dark belief in a lower power, and maybe this is a kind of blasphemy—but some days I wonder if I have created Gods of Woundedness that I worship and solicit even more than my God of love. Oh lord, I am so ready to relinquish that deity now. I’m ready to see clearly now and keep singing along.

Monday, May 2, 2016

The Literature of Caregiving: Me Before You

Me Before You by Jojo Moyes. Sound familiar? Yes, you’ve seen it on the bestseller list in the New York Times and your local paper. You’ll see (mostly women) reading it on the bus and subway, and at the movies you have seen the poster for the movie version coming this summer. Yes, it’s a chick flick and a romance novel, but what you may not know is…

“Me Before You” is a caregiver story. And while being a romance and yes, teary at times, it is a complex and powerful caregiver story. This novel shows the complicated layering of both family and professional caregiving.

A young woman takes a job out of necessity and becomes a professional companion to a relatively young man with quadriplegia. He is cared for in his parent’s family home and there is paid medical care, PT and other services. So we see a full surround of professional caregivers and how they interact with each other and with the family.

But despite comfortable means, and lots of help, caregiving is still a challenge because of the pain of illness and disability, and because of the human heart. Moyes shows us two people helping each other, and how hard it is to love fully and selflessly.

While readers will be caught up—and I was—in the engaging love story, we are also allowed to observe the very daily and hard, specific details of physical and emotional care demanded of the caregivers. 

This story will land in front of you soon—as book, CD or movie. Here is another full cast of caregivers making imperfect lives while loving and growing. This is the perfect book to introduce the “what if’s” of caregiving and long-term care planning to your family, friends or book club.

The Literature of Caregiving is a monthly series at Love in the Time of Cancer. The first installment is December 8 2014--with "Home" by Marilyn Robinson.

Thursday, April 14, 2016

April is Poetry Month, and so...

“Let us remember…that in the end we go to poetry for one reason, so that we might more fully inhabit our lives and the world in which we live them, and that if we more fully inhabit these things, we might be less apt to destroy both.”

             --Christian Wiman

For this April Poetry Month I’m sharing one of my favorite poems for the Love in the Time of Cancer community:

 “What the Living Do” by Marie Howe:

Johnny, the kitchen sink has been clogged for days, some utensil probably fell down there.
And the Drano won't work but smells dangerous, and the crusty dishes have piled up

waiting for the plumber I still haven't called. This is the everyday we spoke of.
It's winter again: the sky's a deep, headstrong blue, and the sunlight pours through

the open living-room windows because the heat's on too high in here and I can't turn it off.
For weeks now, driving, or dropping a bag of groceries in the street, the bag breaking,

I've been thinking: This is what the living do. And yesterday, hurrying along those
wobbly bricks in the Cambridge sidewalk, spilling my coffee down my wrist and sleeve,

I thought it again, and again later, when buying a hairbrush: This is it.
Parking. Slamming the car door shut in the cold. What you called that yearning.

What you finally gave up. We want the spring to come and the winter to pass. We want
whoever to call or not call, a letter, a kiss--we want more and more and then more of it.

But there are moments, walking, when I catch a glimpse of myself in the window glass,
say, the window of the corner video store, and I'm gripped by a cherishing so deep

for my own blowing hair, chapped face, and unbuttoned coat that I'm speechless:
I am living. I remember you. 

                                                     --Marie Howe
This week I am heading to Massachusetts for Yoga Teacher Training. I'll be back home, and back here at LITTOC,  on May 1st.  Thank you always for reading this blog and inspiring me with your stories. 

Monday, April 4, 2016

When We are Well Enough to Get Cancer

"In the United States the median age at which colon cancer strikes is 69 for men and 73 for women. In Chad the average life expectancy at birthis about 50. Children who survive childbirth — and then malnutritionand diarrhea — are likely to die of pneumonia, tuberculosis, influenza,malariaAIDS or even traffic accidents long before their cells accumulate the mutations that cause colon cancer.
In fact, cancers of any kind don’t make the top 15 causes of death in Chad — or in Somalia, the Central African Republic and other places where the average life span peaks in the low to mid-50s. Many people do die from cancer, and their numbers are multiplied by rapidly growing populations and a lack of medical care. But first come all those other threats."
Those two paragraphs are from a December article in the New York Times outlining the incidence of cancer in the developing world (deeper poverty) versus our Western communities. It suggests a mixed blazing for sure and an intriguing paradox for people with cancer:
 We lived long enough-- and well enough-- to get cancer. 
Reading the entire article is worth your time because in addition to showing what the greater health concerns are "there" versus "here" it also shows the terrible dilemma of what happens to cancer as countries are lifted out of deep poverty. As cancer arrives as the incidence of deadly infectious diseases recedes. 
The article is sobering and surprising--and a challenge to people with cancer and to those in philanthropy and international healthcare.
Here's a link to the whole article. Do take a look:
Here is the link to the New York times article by George Johnson

Tuesday, March 29, 2016

Guest Writer--Amy Halloran--Troy, New York

This week guest blogger Amy Halloran from Troy, New York….expert on grains, breads, baking and making pancakes. In today's essay Amy shares what she's learning about relationships:

For a long time I thought that asking was the most important part of getting what I need. If I could identify and articulate what was wrong or what I lacked, then someone would fill in my blanks. If I told my husband that I needed more affection, or help keeping the kitchen clean, I assumed he would work toward fulfilling my request. 

This thinking extended to all my relationships. I need to see you more, I told my sister, and she didn't argue. She agreed. But neither of us made a dedicated plan to make that happen. So we still didn’t, and don't, see each other enough.

I stated my needs and thought my problems were solved. That’s not how things work. Well, maybe they would if I were a queen, and had a royal court to do my bidding. But here in the real world, relationships are dynamic, and require give and take, two parties discussing their ideas and feelings and trying to learn how to dance to a song that you’re writing together. This is awkward and none of us are skilled at the steps, or know the tune. Not even if we’re very familiar to each other. 

 My sister and I grew up in the same family, and my husband and I shared a vision for a life together that was so strong we pursued it like a mountain we had to climb. Given the circumstances, I should be able to communicate easily and well with these two people, and yet I am learning, always learning how to be and work together with them. As much as we share, we are very distinct. Crossing the gulf between two people, any two people, is tough. Why did I think it would be easy?

One reason perhaps is linked to shopping. Consumer culture leads us to believe that we can make a list, and the store of the world will have the goods in stock. But only so many of our problems can be answered with a dollar. 

Relationships are not transactional. While I thought I was problem solving, all I was doing was making a shopping list. 

I think it’s important to note how consumer culture shapes us, regardless of family values. I grew up in a family that was not materialistic. Forcefully so. Once, I wrote a letter to my parents stating a series of inequities I observed. They didn’t treat us four kids the same – I liked math and was good, too good at measuring things, especially love. 

My dad took me out for the day to show that I mattered big to him.  We drove around, and visited my grandfather; help him with some things around his house. Did some other errands. One of our stops was a flea market, and I thought my father would buy me the easy bake oven that I craved. But our expedition was about time together, not things.  

I was a heavy user of the real oven and had been for a long time, so my dad didn’t want to get me the pink plastic thing which would require a steady stream of silly boxes of cakes. He also was demonstrating that love was not stuff. The lesson didn’t quite take. But I understood what he was doing.

My parents’ examples couldn’t fight the impression I got from our environment, a realm that got even more of a consumer bent over the last 30 years. In America we can shop our way to better health, better spiritual lives, and of course better outfits.  All of this helped me function on a premise that I could make lists for my loved ones, as if I were shopping, and we needed more cinnamon or butter in the metaphoric house of our intersections. Then, I assumed they would give me the stuff that I wanted. This seemed reasonable, right? We were out of a supply, I noticed, so fetch it, please.

Yet was I ready to be the emotional store for the people I love as they ask for what they need? That's another series of thoughts to ponder!

There is more to connecting with others than making lists. We can’t just identify our bruised feelings and find gaps that we think people should fill with help. We need to work with other people to get what we need. Identification is just one step in the process. Have I learned this yet? No. But writing this essay is another attempt to teach myself a lesson. #

Amy Halloran is the author of:
The New Bread Basket--
How the New Crop of Grain Growers, Plant Breeders, Millers, Maltsters, Bakers, Brewers, and Local Food Activists Are Redefining Our Daily Loaf