Sunday, June 25, 2017

There's an APP for that Caregiver

We all need a helping hand when we are a family caregiver, and now there are a variety of social media applications that can go a long way to helping caregivers. 

Sometimes the hardest part of caregiving (after surfing all the emotions that arise) is managing your time. Today we know that—statistically—the typical caregiver is a woman in her forties, married, with children at home, caring for an elderly family member. Add work and economic challenges and you have a tsunami of worry and logistics. 

While the best help for the worry is likely a caregiver support group or a phone buddy who has been through it too, the help for managing logistics can now be on your phone or tablet.

Those logistics center around tasks: who is driving Mom, who is shopping, doing respite, picking up prescriptions or talking to the doc?

Talking itself consumes a huge amount of time and caregiver energy—so a way to outsource or support communication can be a lifesaver. Delegating a single scribe to handle updates to the family & friend communities saves the primary caregiver from call after call every night or every time there is a new treatment or procedure.

Here are a few helpful tools to make your caregiver life a little easier:

Google Calendar: It’s free and many people can use it at the same time. Use it to share info and appointments and ride scheduling.

Wunderlist: a task managing ap for multiple users. You list the tasks and participants can agree in real, online time to take a task and complete it. It also provides reminders. There is a free version for up to 25 participants.

Lotsa Helping Hands: is specifically for caregiver management. You can post requests for help listing specific needs and tasks. Family and friends log in to say yes and take that off your plate. There is also a blog feature where news can be shared out to the selected community all at once.

CareZone: an app for medication management. You can scan the prescription bottles with your phone’s camera and the app creates a list and schedule of all medications and dosages. It also provides reminders and health updates. Medication lists are in one place when talking to a doc or intake coordinator.

There are many more like these that you can find by searching for “technology for caregivers”. Many were designed for care in an elderly population but work perfectly in a cancer care/cancer caregiver situation.

And with any hospitalization --or at your chemo center --ask for the patient relations coordinator—don’t be shy about this-they have the latest news on services at their location and in their networks.

Saturday, June 17, 2017

Summer is Coming

Today we did a three-mile walk up and down the hills.  We were huffing and puffing but moving along pretty well. As we made the turn to come back home I said to John, “Do you remember the summer after your first surgery; you could not walk from our front door to the car.” He did remember. It’s a shock still, how that cutting into flesh and being sewn back together took away so much strength. He looked the same but could not walk at all.

Now we hike and do hills and push each other on. We went to the movies at the

mall yesterday, ate burgers for dinner, went to the grocery store together. None of that possible in CancerLand days.

That summer chemo changed so many things. No movies, no malls, no grocery stores. Even the tiniest bit of air-conditioned air caused him excruciating pain as his throat closed and froze. He couldn’t even look in the refrigerator. I had to learn to cook. That turned out to be one of the gifts of Cancer Land—I became a cook.


But the summer when it all began was so shocking and crazy. 

I think about this today as we hike and run and dress for a trip to Tanglewood tonight. So many things changed. We grew from them and with them. It isn’t everyone’s path. Cancer sometimes ends relationships. It can be too much. There is no blame for that. It can just be too dam hard sometimes.

But what I feel today is gratitude and grace, and I’m cherishing every day we get.

Sunday, June 4, 2017

So this is Nina Riggs--poet, writer, Mom, wife, friend, dog lover, cancer patient. And gone.

Left for the rest of us is her new and amazing memoir, "The Bright Hour--A Memoir of Living and Dying". This fine and beautiful book is about living with--and dying from--cancer.

Nina Riggs was a poet, and that facility with language and images, and her ability to see through the world ensures power on every single page.

Riggs writes with great humor--much needed here in CancerLand, and her book is about living with cancer--raising kids, adopting a dog, being in a marriage even while getting ready to die.

With this book Riggs raises the bar on how to die, and how to see the world every single day that you are alive. This will be the most uplifting book you read this year.




Tuesday, May 16, 2017

"Kindness is more important than wisdom, and understanding that is the beginning of wisdom."


                                                                                 --Theodore Isaac Rubin
                       

Tuesday, May 9, 2017

The Mary Month of May

I grew up in a Protestant family. My brothers and I went to Sunday school, got confirmed, and later married in the same Methodist Church on Pittsburgh’s Northside. Overall, it was a good experience. But I always envied Catholic girls, especially in May.


Our working class neighborhood was a mixture of Protestant and Catholic families. Kids were divided by schools: Spring Hill Public or Saint Ambrose Catholic. But it was a close neighborhood and we all played together after school. 

We were in and out of each others houses often, and one mother could stand in for another when it came to discipline or first aid. The differences were few but the Catholic girls seemed to have something special.

It was in second grade that my feelings of envy emerged. My Catholic friends were having their First Holy Communion. My friends got to wear poofy white dresses and headbands with flowers and little veils. They were given medals with pictures of saints, rosaries and most intriguing, scapulars.

A scapular is two small patches of cloth with holy pictures on them, connected by a loop of string.  My girl friends told me that it protected them from evil and all manner of bad things, and it was a sin, they told me, to take it off.  The idea of a passionate commitment to something, even a string with holy pictures, was very appealing.

Catholicism offered my friends other comforts. As a kid I would have liked a patron saint or a guardian angel, but the Methodist church didn’t offer any of those. Instead we were counseled, in an ecumenically respectful way, that all that stuff was Catholic and kind of magical. Now, this was at the same age that I was fascinated with writing in code, creating invisible ink, becoming a blood sister, playing with the Ouija board and making up secret societies. I was made myth and magic out of anything I could get my hands and mind around.

The best thing, though, that Catholic girls got was Mary. She was presented as motherhood and sweetness, but Catholic girls got a very clear message that there was a woman in heaven, that somebody understood the female side of things.

For Protestant girls, Mary shows up once a year-- at Christmas --to give birth. She might get dragged out again on Good Friday—but only in the background. No role model, no intercessor, no friend. My Catholic pals had statues of Mary. Some had the plastic glow-in-the-dark kind, and the older girls had painted plaster Marys, dressed in blue robes with big doe eyes like my Barbie. And Mary was always standing on a snake. I certainly did not understand the symbolism, but I knew at ten that this 12 inch woman had some power you could not buy for Barbie. 

Best of all, my friends had May altars. A May altar was basically a table with an old lace tablecloth thrown over it. They put their Mary statues on it with flowers and candles that they were allowed to light when they said their prayers.  It still strikes me how feminine those altars were. The Catholic girls had total permission to identify with the feminine in spiritual matters. But no one gave little Protestant girls such romantic, mysterious things to do or own.

This carried over into all of a Catholic girl’s life. Mary got prayers, devotions, pilgrimages and even architectural consideration: there is a Marian shrine in every Catholic Church. Talk about having a room of one’s own. Mary’s presence meant that the Catholic Church included at least one woman at a high level. In her assumption into heaven, Mary had broken Christianity’s glass ceiling.

We pretty much get the shape of our beliefs early on, and what Catholic girls got was a She and a Her, someone like them, to pray to. And they got all those accessories: medals, scapulars, rosaries, ruffled altar skirts and little white prayer books. Protestant girls got black leatherette New Testaments, Jesus stories, but nothing that said, “We’re glad you’re a girl.” 

Of course, later, Catholic girls ran into, the birth control problem and the brick wall that said, “You can’t be a priest”. But what I saw my Catholic friends get was faith in their girlhood and an image of feminine power. That’s not such a bad way to start out.

Thursday, April 13, 2017

The Easter Brothers

 I consider the following to be quite telling about my own personality: I never believed in Santa Claus. I never, even as a little kid, imagined or believed that a man would go house to house in a red suit and bring toys and stockings to boys and girls.

I did, however, believe, until I was ten or maybe even older, in the Easter Bunny.  In my own defense I have to explain that we lived near the woods and I saw all kinds of rabbits, little baby bunnies and distance-covering jack rabbits, all the time. But I also had two older brothers who, as only big brothers can, facilitated, my belief. Sig and Larry would talk just slightly out of my earshot about The Bunny. “Don’t let her see him”, and “Did you see the basket he left next door?” They also, to make it more convincing, put bite marks on the
handles of our Easter baskets.

My brothers died when they were 42 and 48. Now I’m the oldest. At Easter I miss them. I miss having an Easter basket from Lar who –even as an adult—made me one that included the bunny’s teeth marks to remind me just how naïve I had been. And I miss our sibling tradition of finding the family “King Egg”.  As Easter approached we would each decorate our own hard-boiled egg, fortifying them with dye and crayon and competed (Sig and Lar were both went on to become engineers) by ramming our colored eggs together to see whose broke first. 

I also miss dressing up for Easter services, complete with new dress and corsage. The three of us continued to go to church on Easter even when we had walked away from organized religion. We kept this holiday because we all liked the uplifting Easter hymns like “Up From the Grave He Arose”. 

I kept going to church on Easter even as, and after, Sig and Larry were dying because those Easter hymns gave me a weird hope.  It was not a hope of miraculous recovery for  either brother,  or necessarily for a reunion in the “Great Beyond”, but  hope for  my  own  “arose” from the heartache of losing my  brothers,  my playmates,  co-conspirators and occasional torturers.

One of my final conversations with Sig was about my car. I was 40 years old but still easily defeated by my car worries.  Larry, who was then sick, was caring for Sig who was dying, and I called their house in tears to report the impending death of my car. Larry, who was on the phone with me, relayed the mechanic’s opinion to Sig who was lying in what would soon be his deathbed. 

Lar said to me, “Sig wants to talk to you”. I was surprised because Sig’s speech had become painful and very difficult for him. I waited until Larry positioned the phone for Sig to talk. 

“Here’s what you tell them….”, he began, and he proceeded to dictate a set of car repair instructions to convince any mechanic that I knew a nut from a bolt, and that this girl had a brother who would not see his sister taken for a ride.

At Easter I have the best memories of a girl with brothers—of a basket-carrying rabbit who was “just here a second ago” and of making faces to spoil the, “Come on; Say cheese” Brownie snapshots that Dad took of our Easter outfits.

Apart from any theology, Easter lets me believe in the resurrection of my family, of my all too gullible girlhood self, and in a life that rises, falls, rises and dies over and over as we each cycle through our layers of loss and gain.

Thursday, April 6, 2017

The Other Side of Impossible

This week I had the opportunity to read a new and very inspiring book that will be of interest to folks like us in CancerLand.

“The Other Side of Impossible” by Susannah Meadows—is (the subtitle) about: “Ordinary people who faced daunting medical challenges and refused to give up.”

The seven primary stories in her memoir/manual/guide are about individuals and families confronted with truly daunting medical challenges—confusing diagnosis, nearly impossible treatments, horrific journeys thru complicated medical mazes. 

Here in CancerLand—for the most part—we deal with more or less clear cut diagnoses: colon cancer, breast cancer, lymphoma etc. But still daunting. And we especially understand the grief, confusion and the head banging about whether to use complementary medicine, New Age treatments or good old chemo and radiation—or most likely a self-created combo of the above and more.

Here are stories of parents, partners, individuals and friends. Choices, mysteries, decisions and prayers.

If you are trying something that makes your doctors eyes roll, or if you have chosen a doctor that makes your friends eyes roll—or if you want to borrow some courage and fortitude and faith—check out Meadows book.

“The Other Side of Impossible” will be in stores on May 2nd and you can place an order now at Amazon.com