Wednesday, September 27, 2017

Caregivers: The Invisible Patients

At a cocktail party last week, the conversation turned to healthcare. Of course, these days, the conversation might also turn to healthcare at the gas station, yoga class, or PTA meeting. We’re all concerned about what changes are coming to healthcare.

But we residents of CancerLand have special concerns—we worry about what will happen to preexisting conditions, the cost of tests and screening, and possible limitations on certain treatments. Patients surely don’t need that extra fear, and as caregivers we take an extra twist in our healthcare worry: we put off our own care.

So often we caregivers forget that we are patients too. We are the “invisible patients.” That’s the term I’ve  
been chewing on this week after reading the book, “Healing Healthcare –How Doctors and Patients Can Heal Our Sick System” by Jeff Kane, MD.

That cocktail party conversation turned out to be a valuable one because one of the people I was chatting with insisted that I get—and read—Kane’s book. And he was so adamant that I ordered one right away and dug in. 

I was expecting economic analysis or demographics or maybe operating room stories but I had a great surprise: Kane’s specialty is compassion. Yes, compassion as a best practice in healthcare and measuring the impact of compassion as a practice in hospital and home care. Yes, wow!

You’ll be pleased too to see how Kane writes about the importance of family caregivers—and he uses the term, “the invisible patient”. He’s a strong advocate for doctors and nurses being trained to include the caregiver in exam, discussion, treatment planning and aftercare—and most radical, he believes that the primary patient cannot get well if the caregiver’s needs are not addressed. And by “addressed” he does not mean a long soulful look and “How’s it going Bob?” moment before the couple leaves his office. He means taking the caregiver’s blood pressure, talking about their sleep and diet, and finding out how much help they have at home.

Kane documents why this is so crucial: the incidence of depression and anxiety in caregivers, how those problems bloom into physical disorders such as high blood pressure, decreased immunity, and cardiovascular disease. If you are a caregiver or are around some you’re not surprised to read this. But look at this from Kane: “Spousal caregivers age 66 or older have a 63 percent higher mortality rate than non-caregivers the same age.”

This smart doc knows that one patient will turn into two very quickly when giving care to a loved one with cancer or other serious, chronic illness.

Kane’s book is well worth a read: for all caregivers, for family members around the caregiver, for healthcare staff too. An idea: Be bold and buy a copy ($1 or $2 for a used copy) and hand one to your doc and mark the pages about caregivers. A little education and honest conversation can go a long way.

Monday, September 18, 2017

When a Woman Writes About Her Life

“If a woman writes about herself, she’s a narcissist. If a man does the same thing, he’s describing the human condition.”
--Emily Gould

Emily Gould’s book, “And the Heart Says Whatever” is a collection of essays about what it’s like to be her—and by showing us her one life we learn a lot about –not just other lives, but about how to, maybe, think about our own lives.

She also said--and I love this, “When women are honest about their experiences, it’s destabilizing.”

 Right? 

As I continue to write about cancer and caregiving and love and sex, and about work and clothes and money and fear, I swing between trying to be helpful and being both destabilized and destabilizing. 
So, I also ask: Am I writing one woman’s story or am I describing the human condition?

In some ways, I think it’s not my job to decide, but rather that is yours to discern. As we learn from Alanon, “Take what you like and leave the rest.” My hope—and my prayer—is that by writing about my fears and flaws I can offer you a way to deal here in CancerLand.

Wednesday, September 6, 2017

The Literature of Caregiving: Tom Lubbock and Marion Coultis

It is not often that we have both patient and caregiver as extraordinary writers. And while often sad and hard stories we learn so much by being able to see both sides of a cancer story. Even a story unto death. 

This month I read a pair of memoirs that give us this perspective and some new language and eyes into a cancer patient and cancer caregiver with books by Tom Lubbock who was Chief Art Critic for London’s Independent newspaper. Tom was diagnosed with brain cancer in 2008 and died in 2011. His book, the chronicle of those three years until days before he
died, is “Until Further Notice, I am Alive.”

His wife, the artist and writer, Marion Coutts, wrote her book, “The Iceberg” through and after that same time period. Hers is the parallel story of the diagnosis, surgeries, hospitalizations and, for both of them, the heartbreaking complication of raising their baby son, Eugene.

What many of us who love words, reading, books, and arguing our point is the injustice and indignity of Tom’s particular cancer which was situated in the language center of his brain. The wonder and strange thrill of his book is reading him as he is articulating what language means and what it means when a writer is losing language. You would think: “too morbid”. But no.

These books, Tom’s and Marion’s, are slim and carefully crafted. These two are such fine
writers so I encourage you to read both, together and side by side. Do you see how each one describes the same day? What does it look like to him? To her? How they see the world includes what they see, as they see each other, even how they see death.

From Marion: “A palliative nurse came to see us at home in the autumn of 2010. She said, ‘On a scale of one to seven, how would you rate your quality of life?’ There was a long pause while we digested this madness. Tom, slightly absent, lightly bored, said thoughtfully, ‘That’s a ridiculous question. Obviously we go—“Oh God” all the time, at all the stuff to be done. But generally it is wonderful. We are interested.”

From Tom: “Mortal. We occupy a limited patch of space for a limited patch of time. Like the art of realistic paintings: pictures hold an equivalent in the confined areas which they enframe, and the brief narratives they represent…We know the deal. We’re bodies. We are not in our own hands.”

Marion’s life continues. Tom’s life does not. But these books do. And what they “enframe” for us is wisdom, self-compassion and love. And this thing that we all do until death—we try to put life into words.

Saturday, September 2, 2017

Grow Your Own Mother

Last week on vacation I read, “Will I Ever Be Good Enough?” by Karyl McBride, PhD. It is about healing and growth for daughters of narcissistic mothers. McBride writes about the persistent feeling of never being good enough and the invisibility that accrue to women whose mothers were on the continuum from self-absorbed to full-blown narcissist.

Part of the recovery that McBride suggests is developing an internal mother who is all the things that one’s real mother was not able to be. 


So, at the beach I began to envision what that new mother of mine might be like. I began to imagine borrowing parts of other women—and some men—to grow my own mother.

To be fair I did include many of the great qualities of my own real Mom: passion, curiosity, charity, physical energy and humor. But, as I walked the beach, I began to name the people who I would include as I grow my internal mother.

I added in bits of Georgia O’Keefe, May Sarton, parts of some good friends whom I’d want to have as part of my eternal mom-in-me. I also added in my two grandmothers: Josephine and Sophia. I never met them, but I knew of them.

But could I pass up a grandmother named Sophia—wisdom—in building my inner mother? And Josephine, my maternal grandmother) who was a professional a poker player and the neighborhood “reproductive health advocate” (she helped women in poverty to limit the size of their families.)  As I walked the beach I wrote the names of these woman in the sand, physically co-signing the new mother-in-me.

I picture this mom-in-me growing kind of like one of those pills you drop in water to delight a child. After soaking up lots of water the foamy pill blossoms into a seahorse or dragon. Now, soaked in lots of saltwater—both ocean and tears--I am growing my own mother.