Monday, April 6, 2020

The Tools in CancerLand That Help Right Now

Those of us who have lived in CancerLand, have a tool kit that we can open in this time of COVID-19.   These may not be tools we wished for years ago, but nevertheless, we have them. And maybe now we can lean into those tools to help ourselves and others.

Here's an article from Kate Bowler who is a cancer survivor and a scholar at Duke Divinity School: 

https://www.nytimes.com/2020/04/05/us/kate-bowler-cancer-coronavirus.html?smid=em-share

Maybe take some time today to inventory your tool kit.





What did cancer or caregiving teach you?

Sending you lots of love.


Be well. Be safe. Stay home.

Sunday, March 22, 2020

When Chemo Doubles the Impact of Quarantine

Yes, those of us in CancerLand--whether patients or caregivers--have extra challenges and protocols right now. The pressure can feel more intense, and the restrictions on family are greater too.

Thought you'd like to read this story by Larry Rulison, a reporter for the Albany Times Union--who is working--at home of course because he also being treated for Stage 4 appendix cancer. Here is what it's like at his house in Albany, New York.

https://www.timesunion.com/news/article/Times-Union-reporter-undergoing-chemo-learns-what-15140810.php

What is it like at your house?

What modifications are you, and your docs, making for your care?


Saturday, March 14, 2020

Meditation and Mindfullness for Caregivers

It would seem impossible to add one more thing to the caregiver’s to-do list. But, adding meditation or a mindfulness practice may be the very thing that makes that too long list a little more manageable.

No, doing meditation or yoga or Qigong or another mindful practice is not a total remedy to the stress and business of caregiving, but is absolutely a positive aid and help.

Now documented in many years longitudinal research, it’s been shown that caregivers—of people with serious illness, dementia or a child with a developmental delay—cope better, report more ease, and have fewer physical symptoms of their own when they are engaged in a mindfulness practice.

And mindful meditation, breathing practice or yoga becomes more than just a way to cope with the stress; it’s a way to fully embrace one’s life as caregiver.  

Trying to attend a weekly class may be over the top, but there are many online resources, and podcasts that give basic instruction in Pranayama (Yoga breathing), restorative yoga, mindful awareness, and meditation. 

And if you are part of a caregiver support group, ask if some meditation or yoga instruction can be added to the meeting once a month.

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.