Sunday, December 3, 2017

The Glorious Debris


“Every one of us
 is called upon, probably many
 times, to start a new life.
A frightening diagnosis, a
marriage, a move, loss of a job…
And onward full tilt we go,
pitched and wrecked and absurdly
resolute, driven in spite of
everything to make good on a
new shore. To be hopeful, to
embrace one possibility after
another—that surely is the basic
instinct…..Crying out: High tide!
Time to move out into the
glorious debris. Time to take
this life for what it is.”

 --Barbara Kingsolver, from High Tide in Tucson

Saturday, November 18, 2017

Criticism is a Poor Way to Ask for Help


Diane Sawyer was interviewed on Oprah Winfrey’s TV show.

Oprah asked Sawyer about her famously good marriage to Mike Nichols. Sawyer said the best piece of advice she was given for marriage was this: “Criticism is just a very poor way of making a request—so maybe, instead, you could just make the request.”

I loved that. How many times have I lobbed a critical remark instead of asking for what I wanted? Have you ever done that?

Saying, “You are selfish and lazy” is just a very poor way to ask: “Can you help me?”

And, “You never listen” is often a chicken’s way to say, “Could you sit with me and listen to me for five minutes?”

It’s also in the realm of not expecting the one we love to be a mind reader. And, by now we know that “He should know…” is for teenagers and we are grown-ups in relationships that we chose.

Don’t you think Diane Sawyers marriage advice is great? 

“Criticism is just a poor way of making a request.” So, maybe, just make the request.

Thursday, November 9, 2017

Holiday Gift Ideas to Brighten the Season for Caregivers

This week we welcome Beverly Nelson from StandUpforCaregivers.org with suggestions to make nicer holidays for family caregivers:  


Caregivers are the unsung heroes of families and the healthcare industry.  They carry a heavy burden when it comes to the care and tending of others. If you have someone on your shopping list who is a caregiver, consider giving an especially meaningful gift this holiday season.  

 Who are the caregivers?  Most of us will be caregivers at some point in our lives.  In 2012, over a third of the American population gave unpaid care to someone with a chronic health condition.  According to the U.S. Department of Health and Human Services, that percentage will steadily increase as the population ages.  Most of those people providing care also hold down other jobs.  

 Caregiver stress.  Caregiving is physically and mentally demanding.  As time goes on, those performing the role of caregiver often experience negative effects from the burden of their duties, developing what is termed “caregiver stress.”  Symptoms include depression, anxiety, a weakened immune system, increased risk for chronic disease, obesity, and an inability to concentrate.  

 Gifts for caregivers.  Because being a caregiver is such a stressful role, consider a gift of self-care.  Encourage any caregivers you know to do something indulgent and good for their mental health.  Experts at The SeniorList recommend gifts “that help the caregivers in your life feel recognized, appreciated and pampered.”  Here are some great suggestions:

Give them a break.  According to some experts, the best gift you could give is an experience or service.  Do their shopping or housecleaning, prepare a meal and deliver it to them, or give them a respite for a day or overnight.

Create gift certificates.  Think through what this caregiver might really need and make gift certificates “redeemable upon demand.”  The Washington Post suggests you could make six certificates for 29 venting sessions.  You can make gift certificates for delivering meals, housekeeping, or that overnight respite, too.

Create a personal treasure.  The Caregiver Space suggests creating a keepsake such as a scrapbook or memory album.  Make it especially sentimental and if the person in care is still able, interview him or her and include the information.  

Photo collage.  Put memories on the wall in a photo collage.  You can always include some handwritten notes in the collage along with the photos.

Food delivery.  Your caregiver might really appreciate a monthly or weekly food delivery service.  Join a food club and make the caregiver the recipient.  The Adventurous Writer recommends clubs that offer baked goods, fruit and cheese, coffee or chocolate.

Spa day.  Consider an outing at a local spa, complete with massage, pedicure and facial.

Two tickets and a certificate.  Give two tickets to an event your caregiver will enjoy, along with a certificate for you to give respite while the caregiver goes out with a friend or significant other.

Aromatherapy.  Put together some candles, room sprays, oils and lotions in a relaxing scent like lavender.  

Gourmet gift basket.  Assemble favorite coffees or teas along with chocolates, shortbread, spreads, and dried fruits and nuts.  

Organizer or calendar.  Select an organizer with a luxurious cover or a calendar with inspiring, hopeful quotes.  Make sure there is plenty of room for writing notes.

Periodical subscription.  Periodicals can be set down and returned to as the caregiver’s time permits.  Consider a magazine relating to a favorite hobby, such as birdwatching or cars.

DVR subscription.  Give the opportunity to record the shows your caregiver is missing.  He or she will enjoy catching up when things settle down.

Journal.  Many caregivers find journaling helpful for reducing stress.  Find a special journal and include a luxurious pen.  

 Celebrate caregivers!  
 Caregivers carry a heavy load and can easily become run down physically and mentally.  Show the caregivers in your life they are appreciated during this holiday season.  Give them gifts that pamper them and are meaningful.

by: Beverly Nelson of StandUpForCaregivers.org

Wednesday, October 25, 2017

Gratitude Poem

When I write the word “Gratitude”
I think recovery.
I don’t think “cancer”.
I think gratitude for him
for me, for this
     --surely not this?
We are grateful or we are not.
We say Yes! and Thank you!
All around me well-meaning
friends say,
“You can say ‘No’!”
But I say Yes
I don’t No.
Who knew…
“It’s like a relationship on steroids” I
told a friend and
then I realized
that was no metaphor.

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.