Monday, October 1, 2018

How to Talk to a Cancer Patient

Oh, this one made me laugh today. The link below from McSweeney's is serious business but if you have spent time here in CancerLand you will be nodding as you read and you'll be laughing too.

The title of the article is: "How to Talk to a Cancer Patient Without Being a Complete Twit".

Yep, I've been on both side of this one. I've been the recipient and the twit.

This is a good link to share with friends, family and coworkers. Many future twits out there and we can save them that life.

Here's the link:

Saturday, September 8, 2018

Getting Sick While Getting Well--Post-Hospital Syndrome

An article a few weeks ago in the New York Times highlighted what you may have noticed or suspected: going into the hospital creates additional problems for many people. We might have imagined that a loved one "picks up" a problem in the hospital--a flu or infection, but post-hospital syndrome is more than that.

Paula Span, writing in the column, "The New Old Age" highlights the research that shows that the stress of being hospitalized kicks off a host of other issues/illnesses in a person already vulnerable.

That vulnerability might be a cardiac problem, aging or cancer. It's a bit of "whack-a-mole" healthcare or "go in with one--come out with three" medical issues.

You've heard people say, "Hospitals make people sicker." Don't roll your eyes, there is more than a grain of truth in that. It's not the hospital per se, but the stress of being in a  hospital that can compromise your health.

Here's the article from the New York Times. Link below right here:

Monday, August 13, 2018

Myers-Briggs Can Help Caregivers and Patients

You’ve probably taken the test at work or as part of a self-understanding workshop. The Myers-Briggs Personality Type system helps us to understand ourselves and others, and to learn about our preferences and most importantly—the way we get and manage energy.

You know the words even if you don’t know your type.: 

These four dyads represent a continuum of preferences, or ways we operate in the world and with both ourselves and others. 

What I love most about Myers-Briggs is that it is “nonpathological” meaning there is no good-bad, or right-wrong identity. Each of these is neutral and helpful. Over the years I have found that using these types and this language a great way to work through relationship conflicts and conversations—whether workplace, friendship or intimate relationships. 

But recently I have been thinking about how Myers-Briggs can be helpful to caregivers. I’m part of a care team for a friend with a serious illness and as the team is volunteering to do everything needed, I see the types come into play. The introverts would like to visit one on one, the extraverts are hoping for group activities or a crowd at dinner. The N’s are reflective and guided by their gut, the S’s ask for tangible specifics.

 Without understanding that these are “types” it would be easy to become annoyed. One could be tempted to criticize in a situation like this, but there is the beauty of learning how Myers-Briggs Typology works. Each person –or type--is managing their own energy in a situation that is already energy demanding. Simply knowing that can cut through the “Can you believe that she…?” and “Who would ever want to…?”

Another way that we can effectively use the language of Myers-Briggs helps to better understand the needs of the patient. Our MB type doesn’t vary a great deal when we become ill—but it will instead become more manifest.

Try this test: If I am very ill I would like my friends to
  1. a. Visit me a lot, stop by, bring the joy every day
  2. b. Limit visits call before you come, maybe no visitors at all.
There you see (a) an Extravert patient and (b) an Introvert patient. It’s so tempting to think, “That’s just wrong” or “She doesn’t really mean that” especially if yours is the opposite type. So, it is crucial to check your assumptions --and your type.

It is the E and the I that need the most attention. The issue is about how energy gained and conserved. Both patients and family caregivers need enormous amounts of energy—so it’s important to assess each one’s type. No, you don’t want to administer a test, but pay attention, or recall how they handled energy before the current situation arrived. 

It is most challenging when the caregiver and the patient are on opposite ends of the spectrum. The extraverted patient may want lots of visitors and say, “stay for dinner” and “we can all watch a movie in my room”. An Introverted caregiver will be drained by that. 

You are not a bad caregiver if you dread that. But, paying attention to Type, you can ask another Extraverted friend or family member to “host” those experiences and you use that time to get away alone for a while.

An introverted patient will prefer to limit visiting hours and say, “no drop-in’s please”. Extraverted caregivers—you need to be careful to not think, “Oh, we need to cheer him up—let’s all go over and play cards with him.”

Remember there is no right or wrong way to be a patient or a caregiver, but we can make situations much more difficult by not paying attention to each person’s preferences, and not noticing when our own Type is influencing our thinking. This is one place where the Golden Rule is absolutely wrong. Do not do to others what you’d like to have done to you. Instead, think about Type. Know your type and your preferences and ask questions. 

The small paperback, “Please Understand Me” by Kiersey & Bates is an excellent introduction to the Myers-Briggs Typology—and it includes a short quiz that can help you learn your own preferences. 

Monday, July 16, 2018

Wendell Berry's Creative Process in CancerLand

I have a quote from Wendell Berry taped inside my day planner. When he wrote this he was trying to articulate the creative process. But I also believe that his words are equally true for those of us discovering a cancer process.

Caregiving is a deeply creative process, and it has many of the same stages as writing poetry and making art. 

Wendell Berry writes:

“Form serves us best when it works as an obstruction to baffle us and deflect our intended course. It may be that when we no longer know what to do we have come to our real work and that when we no longer know which way to go we have begun our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings.”

I love that.

 “The impeded stream is the one that sings.”

But most of the time in making art, and in CancerLand, we don’t want the impediments, the boulders, the rapids.

If he is right, then I am singing. I feel impeded often. Deadlines and doctors. Finding the right words and the right materials. Finding the right prayers and the right moments to pray.

“When we no longer know what to do we have come to our real work.”

Going down that river feet first, tumbling, laughing, praying, singing.

Saturday, July 7, 2018

The Best Books About Caregiving

There are lots of books to tell you how to be a caregiver—books for spouses, siblings and adult children. There are specialized books for caregiving for Alzheimer’s or cancer or MS etc. But sometimes you want or need more than a how-to, and more than the facts—you want to know about the feelings. And for that we have to go to literature.

I teach a class on the Literature of Caregiving, and I have found that these are the books that people crave and that often answer the questions that no one knew they needed to ask. 

So, here are some of my favorite books about caregiving. You’ll have some surprises I’m sure, but caregiving is nothing new to humankind, and great works of literature touch all situations and feelings that make us human.

Caregiving Memoirs:
Autobiography of a Face, Lucy Grealy
Cancer Vixen, Marisa Acocella Marchetto (It’s a graphic novel)
Midstream, Le Anne Schreiber
Landscape Without Gravity, Barbara Lazear Ascher
Truth and Beauty, Anne Patchett
The Story of My Father, Sue Miller
Low Down: Jazz, Junk and Fairy Tales. AJ Albany
The Broken Chord, Michael Dorris 
Operating Instructions, Anne Lamott
Three Dog Life, Abigail Thomas
The Best Day/The Worst Day: Life with Jane Kenyon, Donald Hall
The Two Kinds of Decay, Sarah Manguso

Caregiving Fiction:
We are All Welcome Here, Elizabeth Berg
A Patchwork Planet, Anne Tyler
Celestial Navigation, Anne Tyler
Anna Karenina, Leo Tolstoy
King Lear, William Shakespeare

Add a few of these to your summer reading. You’ll be in good hands. 

Thursday, June 28, 2018

Learning from Sheryl Sandberg's Option B

Last week I was in Chicago attending the SHRM—Society of Human Resources Managers—conference. I’m not an HR manager but at the last minute someone could not go so I said yes. And what a treat. 

Chicago, of course, is a great city, and the weather was great, and I walked a lot and ate a lot.

But the best part of the conference was the opportunity to see Sheryl Sandberg—COO of Facebook-- in person. She was the keynote speaker, and she was also interviewed by Adam Grant, who was the co-author on her powerful book, “Option B”.

You may know of Sheryl for her first book, “Lean In” –about women and leadership. That book has been celebrated, criticized and parodied. I had mixed feelings about that message: “What’s holding you back is that you are not speaking up, working 80 hours and leaning in.” Just a teeny bit of privilege there.

But when I read “Option B”—written after Sheryl’s husband died unexpectedly—I was cheering for her and the message: “When option A is no longer available, you have to kick the sh*t out of option B”.

If you have not read—or even better, listened to—“Option B” go get it. If you have cancer you are living option B, and if you are a caregiver, you are living option B. You will laugh and cry along with Sheryl, and you will race for a pencil to write down great ideas from co-author, psychologist Adam Grant.

In Chicago Sheryl talked about what she learned, and because this was a conference for HR people she gave great advice for organizations and people at work. She is the COO of Facebook and she was stunned to learn that her company offered only five days of bereavement leave for the death of a spouse. Changing that for American businesses has become her crusade. She asked every HR director to go home and change their policy to 20 days—that’s four weeks.

She also spoke to the audience as people who are coworkers of someone living option B.

 She said, “Don’t avoid talking to your coworker about the death in their family or the cancer they are dealing with. Bring up chemo and caregiving with a coworker. You are not reminding them. They already know they are hurting.”

You, here in CancerLand, know that look at work. Someone trying to not notice that you have cancer, not asking about your sick child, or your Mom in hospice. 

HR Departments should have copies of Sandberg’s “Option B” or maybe some of us should keep a couple of used copies on hand. Everyone—every single one of us—will be called on to kick the sh*t out of option B someday. So let’s start learning.

Wednesday, June 13, 2018

Loving the Wrong Person--Andrew Boyd

Getting ready to officiate at a friend's wedding a few weeks ago I was reading a lot of love and relationship poetry. As you'd expect there was a lot of blue birds and idealism and perfection and
forever in those volumes.

But then I came across Andrew Boyd, and his poem, "Loving the Wrong Person" and I can that be a wedding poem? And then I read it and I thought, "this is the perfect poem for the perfectly wrong couple." Voila!

Here's that perfect poem:

 We’re all seeking that special person who is right for us.
 But if you’ve been through enough relationships, you begin to suspect there’s no right person, just different flavors of wrong.
 Why is this? 
 Because you yourself are wrong in some way, and you seek out partners who are wrong in some complementary way.
 But it takes a lot of living to grow fully into your own wrongness.
And it isn’t until you finally run up against your deepest demons, your 
unsolvable problems–the ones that make you truly who you are–that
you’re ready to find a lifelong mate.
Only then do you finally know what you’re looking for. You’re looking for the wrong person.
But not just any wrong person: it’s got to be the right wrong person–someone you
lovingly gaze upon and think,
 “This is the problem I want to have.”

--Andrew Boyd