Saturday, October 26, 2019

The Carry-on Bag for the Caregiver

When you become a caregiver for someone with cancer you need to prepare yourself for the role. 

You have logistical work to do, of course: calendars, credit, insurance, benefits, appointments and medication reconciliation. 

And you have emotional work to do: Fear, worry, love, and the biggie: boundaries. If you are the caregiver for an adult patient you don’t want to be parental, but you will likely need to be responsible. 

You’ll need to separate your feelings from theirs and have your own support team when you cannot turn to your partner to be your support while you are caring for them.  You may have depended on your partner to help you through hard times in the past, but when you enter CancerLand, your partner’s illness becomes the hard time. 

Your partner may have been the one who managed the logistics of your life: cars, money, credit etc. And your loved one may be very competent in these areas but once chemo begins or the impact of other meds like pain killers you will—temporarily—lose that competent partner. And the distraction factor is huge: “Am I going to die?” can undo the most fastidious financial manager.

So, caregiver—you are now in charge:

Get every account number and password in one place. 

Get copies of the medical power of attorney and have two copies with you at all times. You’ll need to hand it over again and again. Just because you put it in the medical record last month doesn’t mean it’s still there.

Get a limited Power of Attorney for all things non-medical as well. There may be things you need to transact on behalf of your partner, or documents you need to see—medical and non-medical and you’ll need that Power of Attorney to graciously make your point.

Start your caregiver notebook immediately—if the diagnosis was slow to arrive you may not have written down every little thing—so back date a few pages and fill in all you can remember: dates, ER visits, doc appointments. Then keep this notebook in your caregiver tote bag (below) and always return it there. Don’t keep it on your desk or at work---you may need to rush to a hospital or jump into an ambulance and that tote bag is all you need to grab because it will have:

Your caregiver tote bag is your home away from home. Buy extra of everything mentioned here so you are not running around or borrowing from the bag. This bag is sacred. In the bag you have:

*Your caregiver notebook—not too big—spiral is great, but no three-ring binders—too cumbersome
* Pens and sharpies and a highlighter
*A written (paper) list of everyone’s phone number: family, friends, doctors, hospitals.

 (Yes, I know they are in your phone but if your phone doesn’t work, dies, isn’t permitted—you have the numbers) And people who might not be in your phone—your partners employer, doctor, best friends.
*A phone charger—a separate charger that only lives in this bag.
*A book to read in waiting rooms—like Goldilocks—not too hard and not too easy. A good book
*Magazines—there will be times you are too fraught to read a book and the magazines in waiting rooms are awful and old.
*Some spiritual or inspirational literature. Something to lean into that inspires and uplifts you. There are lots of nonreligious ones—a daily meditation book etc. There are several just for caregivers.
*Envelopes—for when you want to leave a note for a doc or nurse
*Nonperishable snacks—protein bars, packs of nuts, candy bars that cannot melt, bring more than sugar—a 30-minute appointment can become a six hour wait in a flash.
*Cash—yes, paper money and coins for just in case for phones, tips for the valet, coffee machine etc.
*A sweater or shawl that you keep in this bag. (Do not “borrow” to wear to work.) Waiting rooms and ICU rooms are cold—on purpose. And fear has a way of lowering your body temperature.
*The Healthcare Proxy (multiple copies) Have this conversation with family early—include his/her parents, siblings, ex-spouse, step kids. Be sure its legal and official and notarized. 
When your partner is sedated or unconscious or in the recovery room you don’t want the additional pain of  a family fight over, “He wanted…she wouldn’t want…I’m the husband…Well, I’m his mother.” One spokesperson. One proxy plus a backup.
*The Powers of Attorney—keep copies in the tote bag.
*Tooth brush and mini tube of toothpaste (in a ziplock)—Just in case you need to stay longer or just to refresh yourself mid-day
*Extra glasses and bring a case for your contacts.
*Have a copy of your partners driver’s license, birth certificate—copies only—you don’t want to lose the original documents, but copies can come in handy.

Monday, October 14, 2019

One Hundred Autobiographies, by David Lehman

There are many personal stories of cancer. Many self-help stories and many memoirs. And yes, there are even cancer poems.

But now we have a book that is both a cancer story and a work of literature that happens to be a memoir by a poet. We would not wish cancer on anyone, not even—as we say—our worst enemy, but now some gratitude because cancer has given us a gift in the new book:

“One Hundred Autobiographies” by poet and scholar, David Lehman.

It is true that for a writer everything is material, and that for a writer everything is examined through the lens of language, so of course from his first suspicions Lehman began to craft a story—the real and awful story --of his bladder cancer.

The “One Hundred Autobiographies” is one hundred short vignettes detailing and documenting diagnosis, treatment and into the start of recovery. 

While we, here is CancerLand,  may know some things about cancer, and some things about bladder cancer, Lehman takes us to new places only a poet can take us.

He brings popular culture into the rooms, (look there--Keith Richards and Patti Hanson--who knew?) and he also allows intellectual folk like Edward Said and Lionel Trilling to join in. 

But how else would a poet and scholar do cancer?

Lehman shows us his pain and fear, and he shows us his love, and his loving wife, Stacey who documents what Lehman cannot see or sense when he is under the spell of anesthesia and the recovery room.

But here’s the thing about this cancer book: You are also going to laugh when you least expect it, and you are going to scribble in the margins (hence, buy your own copy) all the quotes you want to save and the books you’ll want to put on your library list (“The End of the Affair” by Graham Greene was first on mine.)

Lehman’s book is smart and sharp, with a touch of literary celebrity, and beautiful language. And something else: You don’t even have to have cancer to be enthralled by this book.

David Lehman is the author of: Poems in the Manner of...and Sinatra's Century: One Hundred Notes on the Man and His World. Lehman is the editor of The Oxford Book of American  Poetry and series editor of The Best American Poetry. He teaches in the graduate writing program of the New School in New York City.

Friday, September 6, 2019

Caregiving and Memoir at SUNY Book Festival Next Week

We talk a lot about the Literature of Caregiving here. Caregivers need books about caregiving. Yes, we need the how-to books—absolutely. But we also need books by caregivers, and we especially need beautiful, well-written books by caregivers.

In Albany, next week, we have two of the most beautiful writers on caregiving coming to the SUNY Albany Book Festival—on Saturday September 14th. In a day that includes more than a dozen keynotes and several dozen authors signing, we’ll have two featured writers whose stories might scare us—bad things happened--but who ultimately inspire and encourage us.

Allison Pataki will be here discussing her memoir, “Beauty in the Broken Places—a memoir of love, faith, and resilience.” When she was five-months pregnant, and they were heading off on their babymoon,  her 30-year old husband suffered a massive stroke. Pataki became caregiver to a newborn and an impaired husband. 

Presenting with Pataki will be Abigail Thomas, author of the memoir, “Three Dog Life”—the story of her stunningly disrupted marriage when her husband suffered a severe brain injury, and how she faced the terrible decisions that followed and how she made a different, and fulfilling life.

At their presentation (11:30am to 12:15) we’ll have a chance to hear about structuring memoir and structuring one’s life after such huge disruptions to relationships and careers, and how one makes art—these books are truly works of art--out of shock, pain and crisis.

For some of us caregiving comes on fast—as it happened for these women and writers—with a call, a fall, a break. For others, we move in more slowly into it —no less tragically—with dementia, cancers, neurological illnesses. But for all of us who are caregivers we face this disruption and the challenge to make new lives—and maybe art. And all of us can learn from these writers who let us see the pain, the grief and especially the joy that is there as well.

Join us in Albany next Saturday or get these books for yourself or for a friend.

Monday, July 8, 2019

The Dutiful Daughter's Guide to Caregiving

It’s true that we don’t laugh a lot as caregivers. That means we are extra grateful when someone makes us laugh in the midst of this challenging life. And it always turns out to be a fellow caregiver—often who went thru a horrendous time before us, and who has enough perspective on the caregiving scene to look back and find the humor. 

Judith Henry’s book has that. Her book is subtitled “A Practical Memoir” and it is that.

 It’s her own story, and from that experience of caring for two ill and aging parents she extracts practical and helpful info that benefit the rest of us. 

And we readers can trust her cause she tells the whole truth—the hard parts, the crazy parts, the “I’m losing my mind” parts and the loving parts. 

Here are a couple of chapter titles just to give you the flavor:

Chapter One: I’m OK and You’re Going to Be Ok

Chapter Ten: My Dad Was a Lousy Tipper

Chapter Fourteen: In My Father’s House There Are Many Boxes

Chapter Twenty: The Facts of Life (A different perspective)

Her chapters also include beautiful short essays on love and literature and learning about sex as a 13-year-old reading Lady Chatterley’s lover, so yes, crazy as it may seem “The Dutiful Daughter’s Guide to Caregiving could make a great gift for someone—all of us—of a certain age.

Tuesday, June 25, 2019

Caregiving and Your Career--Cancer and Work

One of the worries--and pressures-on caregivers is  what to do about work. Of course we often fear to admit we are worrying about our job when a loved one has a terrible diagnosis, but our jobs and careers are a reality.

For our sanity and peace of mind we need our work, and the financial realities of cancer are such that most caregivers can't afford to quit a job or lose one.

This week I wrote about caregivers and work for Cancer Today Magazine.

Here's the link:

Sunday, May 26, 2019

A Beauty Guide for Women with Cancer

Ok, so you might think, “Beauty tips, really? That’s the least of my worries right now.” And that might be true at the start of diagnosis and treatment. But as we progress—or our loved one progresses—through CancerLand, issues around appearance will come up.

You know this. We know about hair loss and hair thinning, and skin changes and dryness everywhere. But just as I had to learn the hard way about cancer and sex, I’m learning too about cancer and appearance.

We also know that while the big stuff is on the inside (Courage, Wisdom, Will to Live, and Beauty) our outsides play a big role in how we feel and how we fight for our lives.

Most of the information on what to do is passed woman to woman (rarely man to man) and in that way we gather the scoop on wigs, skin care, eyebrows, oral care etc. But now I discovered a book that pulls it all together. It’s not a new book, but it’s new to me, and
maybe new to you.

The book is, “Pretty Sick: The Beauty Guide for Women with Cancer” by Caitlin M Kiernan. It was published in 2017, but recently Googled its way to me, and I’m loving this resource.

Let me say right off that Kiernan’s tone in the book is one woman to another. She was a beauty and fashion writer, so you’ll recognize the voice.

If you always loved woman’s magazines as I do, you’ll like this approach.

She’s a friend and a cancer sister telling the truth. 

But here’s a fellow cancer sister with the most amazing Rolodex of experts and resources, and friends in the beauty business. 

But let me add this too: While it says “women with cancer” in the title, this is also helpful for men. Yeah, you don’t have to be a “metrosexual” to want to save your hair, or deal with skin or mouth problems. 

On the other hand, Kiernan speaks directly and frankly and honestly about what happens to our sex lives and our sexual parts as a result of cancer treatments. I bless her for that. 

You know, if you’ve been reading this blog for a while, that I came to this fight because NO ONE would talk to me about sex and cancer, sex and chemo, or sex and marriage for that matter. So, I came to this keyboard to do battle with fear, shyness and shame. 

If you have any of those questions go directly to Chapter Nine. No one has to lose their love life or relationship along with their hair. 

Caregivers and friends of friends with cancer: your job is to buy this book and hand it over. You can add a note that says, “When you’re ready to talk about this, I’m here.”

“Pretty Sick” turns out to be a pretty cool way of supporting a friend with cancer.

Monday, April 22, 2019

Marriage Can Be Hard..But...

I’m always thinking about relationships and marriage. It’s one of my favorite reading topics, because, of course, I love learning about what makes people tick, and intimate relationships are the perfect crucible. I find that sometimes the best learning comes from reading about relationships that don’t work, …until they do.

I know it’s a book that divides the field, but I loved Elizabeth Gilbert’s memoir, “Eat. Pray.

 I’ve read it and listened to it. I especially love what she has to say about God and pleasure and faith and how she learned to overcome her fear.

Yes, it did help that she had a big house to sell and a huge book advance. But, for me, none of that discounts her humor and the good grace of her book. 

I especially loved when she asked –by name-- everyone in the universe co-sign her prayer to have her divorce end peaceably. And I also loved the water tower scene in India, when finally turning that ex over to God—and seeing their higher selves meeting and releasing. 

But the book that followed “Eat, Pray, Love” was Gilbert’s second memoir, and the continuation of the story.  “Committed” is about marriage and how Gilbert reluctantly married the man she fell in love with at the end of “Eat, Pray, Love.”

One of my favorite lines from Committed is this: “There is good reason to end such stories with weddings, and buoyant celebrations of love. Because what follows a wedding is a marriage. And marriage is an institution, not a party.”

That’s a great line, and quite borrowable for toasts, I think.

What Gilbert also says is this: “Marriage is hard when you invest all of your expectations for happiness in one other person. A man can be part of a good life, but not the life.”

Now that’s a great poster or a mantra for young women.

So how do you get to a great marriage from the reality of “Marriage is hard”? The recipe is this: Invest in all parts of your life and in many relationships. You have to make (intentionally create) your own good and full life, and then a partner can become a great accessory.

I write a lot about relationships and marriage in my book, “Out of the Woods”—available at bookstores and, of course, on Amazon.

Friday, April 5, 2019

We Measure Our Age in Tubes

It was T. S. Eliot who famously said “I have measured out my life with coffee spoons.” What a lovely image for and from a great poet. But this week I glimpsed another way I can measure my aging life: I can count the tubes.

Yes, you might remember going to Grandma’s house, or maybe to your Mother’s and her medicine cabinet had a million squashed tubes of this and that. Some were shiny, some rusty, and some gooey with missing caps, and you thought, “How does that happen?”

Maybe you also remember when your medicine cabinet had aspirin, birth control, Vaseline and maybe an antibiotic? 

And then as you got a few years older, there are a few more things and then, suddenly it seems, you (like me last week) look at that basket under the bathroom sink and its full of tubes!

We now have all manner of tubes with creams, ointments and lotions. They are specialized and generalized. We have tubes with goop for every body part and every disturbance. They are oily, creamy, pink, clear or shiny. They range from first aid uses to germ killing to fungus battling to skin soothing.  Some I bought off the shelf and a few were prescribed. 

But this is the new measurement of my life—no longer romantic coffee spoons or lovers past. Now I measure my life—and ours—in tubes.

Saturday, February 23, 2019

Cancer and Increased Risk of Suicide

Maybe you’ve had that hypothetical conversation, the one that starts with, “If I ever got diagnosed with…. (fill in the blank) I’d kill myself.” And then someone else says, “No, I could stand that, but if I ever got (fill in blank) I would definitely check out.” 

And on it goes: what we think we could live with, what we think we could not live with: dementia, Lou Gehrig’s Disease, something terribly deforming, or one of 100 kinds of cancer.

Usually when we have those kinds of hypothetical conversations we are in our right minds so we kind of miss the real point: A serious medical diagnosis also has a psychological component or consequence.

In a recent report from the Penn State Cancer Institute, researcher Nicholas Zaorsky (a radiation oncologist) says that a cancer diagnosis can quadruple the risk of suicide among Americans.” 

She says, “there are multiple competing risks for death, and one of them is suicide. Distress and depression can arise from a cancer diagnosis, treatment, financial stress and other causes. Ultimately, distress and depression may lead to suicide. Our goal was to quantify the risk of suicide among cancer patients.” 

What this suggests is that patients, family, caregivers and medical professionals need to
insert care and questions about emotional health in the already crowded conversations and caregiving routines.

With good intentions many of us are tempted to brush past the sadness, distress and grief, “You’ll feel better when chemo/radiation/that side effect is over.” But maybe later is too late.

Nurses and oncologists need to turn around to face the patient and not the laptop, when asking, “How are you?” and maybe pause and ask again, “And how are you really?” And caregivers need to sit with their own anxiety long enough to hear the real distress in the patient’s life and perspective.

Mental and emotional health need attention too.

Thursday, February 14, 2019

Valentine's Day in CancerLand

So, you are in CancerLand on Valentine’s Day?

Yep, that sucks. It’s awful. I know; I’ve been there.

But you do not have to surrender to 5FU and all her crazy chemo cousins. 

You can have Valentine’s Day and romance and cancer. Here’s how:

Remember how Valentine’s Day worked before cancer.

Shed one tear remembering that and then laugh. Find something to laugh about. Call up your true love and reminisce together. Make a joke.

Make a Valentine. If you can get out, buy a pretty one. If you can’t get out (friggin’ 5FU) then make one: paper doilies, red Sharpie, tear a story form the newspaper, write on a playing card (yes you can ruin a deck of cards by taking out the King or Queen of hearts).

Drop your expectations. Like a hot potato—drop them. This is Valentine’s Day in a new country: CancerLand.

Think about love, and email love and text that love. There is so much love in CancerLand and with your partner, state it clearly. You have seen and felt love so grand and so different than people who have never visited CancerLand. Claim and celebrate that love. Explicitly.

People around you may be afraid to ask, “What are you guys doing for Valentine’s Day?” like they are asking other couples. Shame on them—announce what you are doing. Stare down their fear.

Things to keep: affection, conversation, chocolate, cards, flowers, bad poetry, good poetry, and romantic comedies (TV listing are crammed with romantic movies tonight.)

Things to lose: expectations and projections

Things to negotiate: a good meal, gifts and sex. (be creative and open-minded with that last one.)

Refuse to surrender: your relationship, your coupledom, your happiness.

Monday, January 28, 2019

Best Books About Caregiving--Fiction and Memoir

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 caring for someone with Alzheimer’s or cancer or Parkinson's Disease etc. But sometimes you want or need more than a how-to book, and more than the facts—you want to know about the feelings, and to know how someone else felt when they were where you are. 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 those are the kinds of books that caregivers crave and relate to. These are the books that often answer the questions that no one knew that 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 all of the 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 Winter reading. On the couch, in bed, and in your caregiving tote for doctor's offices and waiting rooms. You’ll be in good hands, and good company.