Hidden Caregivers--Children Caring for Adults

It's so much more than, "Mommy's Little Helper." In the United States there are tens of 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:
http://nyti.ms/25bgUwl

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:
http://nyti.ms/1rZJAd4

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.

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.

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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.