Tuesday, July 21, 2015

The Swan

Last night—I was feeling awkward in my own life—then gratefully I remembered this poem that I read a few years ago at a memorial for our friend Will.  I am in love with this image of ungainly, ungraceful swan that lumbers and is awkward.

That’s not what we picture when we think swan—the one in the water, the one we see gliding, regal. And now Rilke says that is like us and I think, “Yeah, that is like me and that is why I like poets—they can put words to this feeling and this fear of my own bumbling, rope tied, tripping over to-do lists life:

"This clumsy living that moves lumbering
as if in ropes through what is not done,
reminds us of the awkward way the swan walks.
And to die, which is the letting go
of the ground we stand on
and cling to every day,
is like the swan,
when he nervously lets himself down into the water,
which receives him gaily
and which flows joyfully under
and after him, wave after wave, while the swan,
unmoving and marvelously calm,
is pleased to be carried, each moment more fully grown,
more like a king, further and further on."

The Swan, by Rainer Maria Rilke, translated by Robert Bly

Friday, July 10, 2015

Caregiver Comedy with a Big Dose of Help

“The Dutiful Daughter’s Guide to Caregiving: a Practical Memoir.”

I was introduced to this new book just this week. As soon as it arrived I opened to a random page and started laughing. Now, as you know, we look far and wide for the chuckles in caregiving but this book has super powers: honest practical help in the complexities of caring for older adults—two aging parents—and a lot of laughter—which (writing truth here: humor often comes from telling the truth) lightens the load and reassures us that we are not alone in this crazy caregiver game.

So yes, Judith Henry has written a memoir and guide. One of my favorite chapters is called, “We Were Never the Waltons”. Doesn’t that just nail it on sibling relationships and caregiving?

You’ll laugh. You’ll recognize yourself—and others—in this book. And—this matters: it’s a small book so it will fit in your hospital visit carry-on bag, and because it has a cute as pie cover you can give this as a gift to friends who are heading down the caregiver path. You’ll be giving them actual wisdom without seeming preachy.

“The Dutiful Daughter’s Guide to Caregiving” by Judith Henry

Monday, July 6, 2015

Helping Caregivers to Manage the Meds

The role of a caregiver is complex.  There are many different responsibilities that are rolled into the work of a caregiver.  From support system to health aide, a caregiver provides for the mental, emotional and physical.

There are many health service developments making stunning breakthroughs and extending longevity and quality of life but there are still so few resources for the millions of caregivers out there faithfully serving loved ones.

One of the key responsibilities of a caregiver is managing medication.  For many, judging multiple doses, endless bottles and continuous renewals takes up precious time that could be spent doing other things.  Here are a few tips to better manage medication and keep you from wondering, “Did I administer that dose correctly?”

Use Technology
Your phone has the ability to set reminders and alarms that can be repeated and labeled at set times every day. This is an easy way to use a tool that has evolved greatly over the past few years.  Gone are the days of days of sticky notes on the fridge or intense spreadsheets that could be marked or read wrong.  Now there is a simple way to set dosage reminders right at your finger tips!  

Simplify Your Pharmacy
You may need some practical tools. PillPack is a company that is transforming the pharmacy model to help patients and caregivers who are managing multiple medications.  They are hoping to reduce medication errors, which, of course, will reduce hospitalizations and emergency room visits.

This is done through a service of pre-sorted medications that include labels of when and how to take each pill.  PillPack coordinates refills and delivers to you: they guarantee on-time (and free!) shipping. You have the ability to manage medications online through a dashboard that includes tracking shipments, billing information and a calendar of all of your critical dates. The dashboard itself is a tool for caregivers. It gives you the ability to manage medication without an additional call to the doctors or insurance company.

Keep A Schedule
Remind your loved one pair’s morning pills with making the coffee and evening pills with dinner.  If you associate the medicine you administer with certain medicines with other, everyday tasks, it will become more of a habit than a hassle.  Always be sure to be complying with the specific restraints of medications by checking their labels!  Make sure you know if a medication needs to be taken with food before giving it on an empty stomach.  

 Always remember to take time for yourself. Taking time away is key for your mental, physical and emotional health.  Make sure, as a caretaker, you are setting time aside for a hobby, a support group, or just a weekly coffee date.  Not running yourself into the ground is a key component of being able to care for a loved when dealing with cancer.

If you are not in a healthy state, you will not be able to manage medicine for another.  Make sure you staying alert to warning signs of burning out.  Hopefully these tips will help with your medicine management and free up time that can be spent elsewhere!

Today’s guest blogger is Hannah T. who works for an online pharmacy in New Hampshire and who knows a lot about medication management.

Thanks Hannah!

Wednesday, July 1, 2015

Thornton Wilder's Book of Sorrow

Thornton Wilder wrote:

Without your wounds where
would your power be? The
very angels themselves
cannot persuade the
wretched and blundering
children on Earth as can one
human being broken in the 
wheels of living. In love’s
service, only the wounded can serve.

Saturday, June 27, 2015

Shakespeare Joins the Celebration

In honor of yesterday's landmark Supere Court decision here are a few words from William
Shakespeare on love and marriage:
Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove.
O no! it is an ever-fixed mark
That looks on tempests and is never shaken;
It is the star to every wand'ring bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
If this be error and upon me prov'd,
I never writ, nor no man ever loved.
---------Sonnet 116--William Shakespeare      

Tuesday, June 23, 2015

Cancer and Fashion

I’ve owned this book –“No Time to Die” by Liz Tilberis--for years and never sat down to read it until now. That makes no sense to me because this is a book about two things that I love to read and write about: Cancer and Fashion.

Yes, how about that for a combination? And it works.

Liz Tilberis was the Editor-in-Chief at Harper’s Bazaar. She was living quite a glamorous and very hard working life—magazines are hard work—when at 41, she was diagnosed with Ovarian Cancer.

This book has all you would expect: stories of celebrities and designers and oncologists and treatments…and the most expensive cancer wig you have ever heard about. Let it be said Liz Tilberis looked as good as any woman can look with cancer and brutal chemo treatments.

But the book has more than the typical cancer memoir and more than a fashion editor’s story. Liz was also a Mom and wife and great friend—and British, and this book covers all of those topics too.

If you loved Diana Spencer—there is a lot of Diana in this book. If you liked “The Devil Wears Prada” there is a lot of behind the scenes for you here, and if you or a friend has Ovarian Cancer you’ll see what you have in common and what the special perks are for the wealthy and well known in Cancer Land. Yes, there is a teeny bit of a social hierarchy in cancer.

I loved this book and loved learning about Liz Tilberis. It is no secret that she died of her cancer. But what I can take away is how she lived with cancer and the choices she made to make her life as an executive and a Mom –also with cancer.

Wednesday, June 17, 2015

What if Cancer Comes Back?

So much of the cancer caregiver’s role is naturally about caring for their loved one. And so, of course, there is a great deal 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 can talk about that, but what I can’t tell him is that I’m not sure I can do this again.”

Oh! I thought, “Oh!”

All of this talk about being a caregiver and dealing with cancer and talking about sex, and I was missing what cancer caregivers might most need to talk about: the scary shame of hating cancer, and the painful, often secret truth, that we do not want to do this again.

Part of it is that the caregiver is in a secondary role: The patient is the lead and the caregiver is the supporting actor. But also we get caught in our own “saint” game and can get trapped by being helpful and loving and we fall head over ass into the expectation that we will: roll with the punches; go with the flow; do whatever it takes, but then, when after the first round of cancer we might think (most often to ourselves) “I do not think I can do this again.” 

Part of it is the timing and the dynamic. When cancer comes the first time we really don’t know a dam thing. We read 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 a year off, a kind of subtle terror creeps in: What if cancer comes back? Then what? Now I know, now I have a sense of this nastiness and exhaustion and fear, and in a way it’s harder because the adrenaline of shock isn’t there to help us. And because there is less help around us when cancer goes from crisis to chronic.

So I got to tell my friend that she is not alone and that I have been there and truthfully, can still go there: “Can I do it again?” I would most likely—our culture has no place for people who run out on cancer—but having that secret or that shame just makes it all so much harder.

No, I don’t want cancer to come back—for his sake and for mine. And I want all of us to be able to admit that. Like the motto of the Amy Winehouse House says, “Fuck Cancer.”