Sunday, October 15, 2017

Caregiving and Your Spiritual Life

Oh, we pray a lot as caregivers. You may be saying traditional, memorized prayers. You may be talking to whatever is bigger than you (I call that your “Bigger”) in a direct and sometimes desperate way. Or maybe your prayer just sounds a lot like cursing, “Jesus Christ!” and “For God’s sake, come on!” But those also count as prayers.

I’ve been a spiritual director and a spiritual coach for many years. Almost as long as I have been a caregiver. For years I had to explain and explain and almost apologize, “No, not religious”, “Nope, not Catholic,” and “No, I’m not part of a church”…and I got used to the baffled looks.

Now, more and more people understand the difference between religion and spirituality, between believing in God and wanting to connect with something bigger and outside of themselves. And as we get older our need to make sense of life and to clarify our values and beliefs presses on us.

So, I was so happy to see that Dr. Jeff Kane, author of the book, “Healing Healthcare” includes a chapter on spiritual support as an essential component in the healthcare system. In chapter 18, “Help is on the Way” Kane writes about all of the kinds of help a patient and the caregiver need to make the medical experience complete and successful.

He writes about one hospital chaplain, David Swetman, who distributes a flyer to all patients and families in the local hospital that includes this statement: 

You think. You feel. You communicate. You have relationships. You have a style, a sense of humor, and attitude and an approach to life. Perhaps you feel deep religious beliefs or a strong connection to God; perhaps you have none. It is all of these non-physical parts of you that make up your spiritual self.”

Kane points out that while illness may cause pain to the physical body, it is in those non-physical parts that suffering resides, and that suffering also requires treatment.

And so, as caregivers we need to give time, attention and resources to our spiritual health as well. 

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.

Saturday, August 5, 2017

We All Have Cancer

Yesterday I looked through my Cancer library (yes, I have a lot of cancer books) and I pulled down the book, “Anticancer: A New Way of Life” by David Servan-Schreiber.

Servan-Schreiber was one of the founders of Doctors Without Borders and an accomplished neuro-psychiatrist. At age 31 he was diagnosed with a brain tumor. His book is about what he learned about cancer, and cancer treatment and cancer prevention.

Some of what he has to say is not new: the importance of exercise, diet, alternative treatments etc. But what is new is his description of roles we play in CancerLand-the patient’s role in his/her own care versus the doctor’s role. He also gives great guidance on how to sort medical info, nutritional info and he writes a lot about the physiological impact of stress. And the stress of cancer. He’s got lots and lots of facts.

But here is the fact that blew me away: “One hundred percent of people have cancer cells in their bodies after the age of fifty.” 

100% of us have cancer after 50. We all have cancer. In some people, it develops into tumors or conditions that become life threatening, in others it does not. But after age fifty we all have cancer cells in our bodies.

That’s wild and powerful information to process. It’s significant when you think about what it means to maintain your health but also relevant to cancer screening and tests for cancer. And it is especially a starting point for wrapping our heads around our consistent denial of mortality and death. Because here is the other absolute health statistic: 100% of us will die. 

We all have cancer, and we will all die. That’s not great news, but it’s not terrible news either. There is a lot of freedom—and maybe a path to peace—in those facts.

Knowing that all of us have cancer levels the field: there are not two camps: the sick and the well. There’s just each of us in some stage of living and dying.

This makes me think of Mary Oliver’s beautiful poem, “Wild Geese” in which she asks,

 “What will you do with your one wild and precious life?”

Monday, July 24, 2017

Do You Worry About Cancer Coming Back?

You may have discovered this: Most of your role as a cancer caregiver is, naturally, doing the daily care of your loved one—and of course, that brings up a lot of worry about that person. But this week a conversation with a friend brought me up short.

I was asking about her husband who has cancer and we talked about the usual—treatments and surgeries and money and family—all the parts of life that are touched by cancer. But then she said, “There’s something else”, and she looked very uncomfortable. So, I waited
and she said, “I’m worried about me.”

“We’re both worried that his cancer is going to come back”, she went on, “and we do talk about that, but what I can’t tell him is that I’m not sure that I can go through this again.”

Oh, I thought, “Oh, she is voicing the taboo.”

All of this I write about being a caregiver and dealing with the logistics of medical care, and the money, and the sex, but maybe I was missing what you might most need to talk about: the scary, uncomfortable, painful and awful-- often secret--truth, that we do not want to go through this again.

Part of it is that as caregivers we are in a secondary role: The patient is the lead and you, the caregiver, are the supporting actor. But we also get caught in our own “saint” game and can get trapped by being helpful and loving and we fall head over heels into the expectations that we will: roll with the punches; go with the flow; do whatever it takes.

But then, after the first round of cancer, after you come back to the surface, you might find yourself thinking, “I do not know if I can do this again.” 

You are not alone. Part of the stress is the timing. When cancer comes the first time we really don’t know a dam thing about what’s about to happen.

We read the pamphlets and go to support groups but we are caught up in the rapid current of cancer and treatment. We mostly just do everything because there isn’t time not to. The pace of care and the newness and the scariness and the constant adrenaline pushes us along. 

But after a period of time, maybe after you’ve had about a year out of CancerLand, a kind of subtle terror creeps in: What if cancer comes back? Then what? Now you know, now you have a sense of this exhaustion and fear, and in that way it’s harder because the adrenaline of shock isn’t there to help us. And it is also true that there is less help—from family and friends--when cancer goes from crisis to chronic.

So, I told my friend that she is not alone. And you are not alone if you had this worry. I have been there and truthfully, I still go there: “Could I do it again?” I probably would, and so would you. But having that secret feel like shame just makes it all so much harder.

No, I don’t want cancer to come back—for his sake and for mine. You don’t either. But I don't want you to have another layer of pain because you hate what cancer did to your good life.