The Brakes On the Wheelchair

Last month, I felt quite clever but at the same time irritated that by the third visit to the hospital we were able to navigate the long walk from the front lobby to ICU without a map. After all, I didn’t sign up for this stint of several visits a day. It was involuntary enlistment.

Nevertheless, in such circumstances you learn the ropes and develop a routine. Being a quick study conserved my energy for more important things. What I noticed though, was how attentively the Cleveland Clinic hospital where my father was admitted eased the stress of family visits with simple courtesy.

Staff at all levels seemed trained to be mindful of visitors. Recognizing – and alleviating - bewilderment is apparently a priority. You get a map every time you check in. Stand still in a hallway for just a moment and staff – whether housekeeping, a tech or a doctor – ask how they can help to direct you. Everyone seemed to understand that – with the possible exception of the maternity floor – every visitor in the building wished they didn’t have to be there.

My first inkling I'd be catered to in this way came at the entrance, where visitor wheelchairs are stashed . On my first visit after arriving in town, the usually abundant supply was gone but a valet traipsed through two departments to retrieve one for us. Then, after we arrived at ICU, I realized my ignorance with this basic piece of equipment – fumbling at first until an aide pointed out the brake that would keep the wheelchair from scooting across the room, landing the occupant squarely on the floor (!).

Like everything else in healthcare, treatment of patient families is institutionalized and codified. In fact, my research on the subject turned up a press release from the Disney Institute announcing a new training module on family interaction for the purpose of increasing hospital satisfaction ratings, which are about to become a matter of public record due to new government regulations.

But only so much civility can be taught in a seminar. At a hospital where veterans lead by example and empathy is valued, painful memories of a last hospital stay are softened by the kindness of strangers.

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(Image via Facebook. Painting by Margaret Stineman.)

Lace Up That Trusty Pair of Chucks

A trip to Ohio last week meant a rare chance to see my BFF and blogging partner Diane “in real life” as we say online. It was great to spend some time with her family! Two of the many fantastic things about the Buckeye State are her husband Dave’s grilling skills (he used to do it professionally – working his way through college) and that pitcher of margaritas that is was in Diane’s fridge.

I also brought back a souvenir for PatientLovingCare readers that I picked up on the front page of Friday’s Cleveland Plain Dealer. I immediately bookmarked this story about walkwithadoc.org and tracked down the organization website to share here.

Walk With a Doc is the brainchild of a physician who found that patients often had trouble getting started on an exercise program but were more than willing to take a walk at a local park if their doctor invited them to come along with him. Soon after he started the program in Columbus, Dr. David Sabgir had 100 people joining him for Saturday morning strolls.

Dozens of doctors have signed on since, agreeing to organize walks and socialize alongside regular folks who like the group support and the idea that healthcare providers are nearby as they tentatively step out for a fitness program. The docs are required to begin with a short health presentation and be available to chat for a 45 minute stroll.

It is said that one hour of walking adds two hours to your life expectancy. Who could refuse that kind of return on investment? I was curious though, what motivated the doctors to sign on for this busman’s holiday of having their patients join them for their workout time. Turns out it’s just good marketing. Sponsoring a local Walk With a Doc builds good will and brings attention to the docs as community leaders.

Click here to find a group near you. Or contact your favorite healthcare provider to suggest starting up a chapter – it’s win/win for both of you.

If I Told You To, Would You Believe In Yourself?

Today we dust off our soapbox on the topic of education. If you are caregiver to a child, you know the unquestionable importance of learning success despite medical obstacles.

What prompted this post was an opinion piece in the Philadelphia Inquirer with the attention-grabbing headline “Self-esteem exercise boosts minority teen achievement.” Despite my initial suspicions, it was not at all a rehash the ‘90s self-esteem psychology that I’ve seen employers blame for a young workforce ill-prepared to learn from constructive criticism because they’ve been raised on a strict diet of praise.

Rather, the article is about the profound power of expectations. Author David Kirp (a Berkeley professor of public policy) says that as early as kindergarten, a disproportionate percentage of African-American boys believe they lack the innate ability to succeed in school. And so they don’t. The piece goes on to cite middle school and college studies that, in a nutshell, suggest that when minority students are a.) told stories of upper classmen who succeeded in spite of feeling at first intimidated and unworthy or b.) given a primer on how “effortful learning” rewires the brain, the result is that test scores and grades measurably improved compared to control groups.

I’ll leave the education and minority-achievement debates to others. But I’ll take this opportunity to speak out on how chronic illness affected my own child’s expectations at school. His symptoms became progressively worse as he moved through junior high. A straight-A student in elementary school, he started to believe “I used to be smart, and now I’m stupid.” When things hit rock bottom, he was seeing several counselors outside of school. My child, his parents and school staff were at wits’ end. But the best thing any of us did - and what he may be most grateful for today - is when people told him he was wrong: he wasn’t stupid, he was just temporarily having trouble while we struggled to get neurological problems under control.

I am still very proud of the essay my child submitted with his college application. The third paragraph mentions a science teacher who recommended he be moved down from college prep to general ed classes because of his medical condition. “I set the goal to ‘prove him wrong’ and I was able to stay in college prep level classes…. I had to study harder and harder just to squeak by. Finally my hard work started to pay off and I was able to bring up my grades and do well on the SAT. For a while, I thought I wouldn’t be able to go to college and now I think I will have no problem earning a four-year degree.”

Fortunately, his college of choice agreed, and he is well on his way to succeeding at earning a bachelor’s degree.

Figuring out where to set the bar on expectations can be difficult. The wrong decision can be disastrous. But I can’t think of any circumstances where setting a goal for improvement is a mistake. Illness, minority status, nor intelligence tests can ever take into account the miraculous power of a child inspired to believe he can “prove them wrong.”

The Truth? You Can't Handle the Truth!

I’ve come across a rash of examples lately involving people who've felt misled in conversations with their doctor. We’re not talking egregious medical malpractice here. But the choice of words in the course of discussing treatment left the patient feeling let down as things played out.


The first example came from a newspaper column that addressed this very issue from a doctor’s perspective. The patient had heard “perfect vision.” The eye surgeon apparently had been alluding to “near perfect” vision, and ultimately lost the trust of the man in his care. How often do you ask your doctor to clarify things? Do you ever repeat back what you just heard to make sure you’re both on the same page?

The next example was a burn victim (a motivational speaker whose inspiring story I’ll save for another post) who didn’t fully comprehend the meaning of “we’ll reconstruct your face” as she lay bandaged up after a horrific car accident. Have you ever jumped to optimistic conclusions only to be later disappointed by medical results?

Then last night over dinner, a friend mentioned her own recent experience: Her rather routine outpatient procedure was halted when a red flag came up in pre-op testing. Over the course of a couple weeks, she was sent for scan after scan, all the while being told “don’t worry, it’s probably nothing.” She finally confronted the doctor with a possible condition they were trying to rule out. Something a relative had died from. The doc finally ‘fessed up. Yes, that’s what we’re looking for, he said. To everyone’s relief, everything came up clear. What would you have preferred? The unblinking truth that something terrible was suspected? Or vague answers to keep the “what if” monster from coming out from under the bed each sleepless night?

Leave a comment and share your own experience.

Round 2: The Family

Well, my job is totally consuming, my husband is working full time, we have a daughter living at college and a seventeen year old son that is finishing up his senior year and getting ready to begin college. There are all the end of year activities of his senior year and just trying to keep up with life. Anyone who has gone through the experience of your child graduating high school and going away to college knows the time and stress involved in this. The craziness starts around Feb. when the FAFSA (Federal Financial Aid) needs to be submitted. After that, the decision is made as to what college will get your child.

Around this time my mother started to complain about occasional pain in her upper arm and into her jaw. Knowing these are cardiac symptoms we quickly encouraged her to see her cardiologist. Within a month (in March) she went in for a heart catheterzation. Before she went in, we heard the patient in the next cubical had to stay because she needed to have open heart surgery. I silently bowed my head and said a prayer for her and was thankful that my mom was not in the situation. Within minutes my mother went in for the procedure and within an hour, little did we ever imagine, those words that were spoken to her neighbor were being spoken to her. Yes, my mother was going to stay in the hospital and have open heart surgery within 48 hours. I remember feeling numb and thinking, "No, this is not a good time." Soon I realized that there really is no good time for this. She went to her room and a parade of doctors came through her room and she had more tests than one could imagine. My brother came home to see her and stay with us for the long wait of surgery and beyond. Once again, our family was all together to deal with this crisis together. What a wonderful support system! I had memories of her hospitalization in 2007 when we thought we had lost her(see post dated Feb. 21, 2010). Going in to see her, the sound of the ventilator was very loud and all the tubes, gadgets and IV's were overwhelming, even for a nurse to see. What would be in store for us? Would she be able to breathe on her own again? Well, no time is the right time, but for some reason we manage to make it work because the power of love gives us the ability to do more than we can imagine.
She is now home. Weak and recovering, but around those that love her the most-her family!

Reverent and Irreverent Mother’s Day Prayers, Equally Sincere

Some time ago, when a friend was expecting her first child, I came across a beautiful prayer online. I formatted it with a picture, framed it, and proceeded to make everyone at her baby shower cry. I’ve given it to every pregnant friend ever since. (What I don’t know is who wrote it. If you’ve got any information, please let me know.)

What a perfect thing to post on Mother's Day.

Then last week on Facebook, someone posted Tina Fey’s prayer for her daughter. If you’re not one for irreverence, please click away about half way through this post. If you stick around, and if you have a daughter or a son, you just might find yourself laughing and crying all at the same time.

Happy Mother’s Day from PatientLovingCare.com.

Special Angels

Author unknown

Once upon a time there was a child ready to be born.
So one day he asked God: They tell me you are sending me to earth today
But how am I going to live there being so small and helpless?

Among the many angels, I chose one for you.
She will be waiting for you and will take care of you.

But tell me, here in Heaven I don’t do anything else but sing and smile
And that is enough for me to be happy

Your angel will sing for you and will smile for you every day.
And you will feel your angel’s love and be happy.

How am I going to be able to understand when people talk to me
If I don’t know the language that men talk?

Your angel will tell you the most beautiful and sweet words you will ever hear
And with much patience and care your angel will teach you to speak.

And what am I going to do when I want to talk to you?

Your angel will place your hands together and will teach you how to pray.

I’ve heard that on earth there are bad men. Who will protect me?

Your angel will defend you even if it means risking its life.

But I will always be sad because I will not see you anymore.

Your angel will always talk to you about me and will teach you the way
For you to come to me even though I will always be near you

At that moment there was much peace in Heaven
But voices from earth could already be heard,
And the child, in a hurry, asked softly:
Oh God, if I am about to leave now, please tell me my angel’s name.

Your angel’s name is of no importance.
You will simply call her “Mom.”

Tina Fey’s Prayer for her Daughter

First, Lord: No tattoos. May neither Chinese symbol for truth nor Winnie-the-Pooh holding the FSU logo stain her tender haunches.

May she be Beautiful but not Damaged, for it’s the Damage that draws the creepy soccer coach’s eye, not the Beauty.

When the Crystal Meth is offered, May she remember the parents who cut her grapes in half And stick with Beer.

Guide her, protect her

When crossing the street, stepping onto boats, swimming in the ocean, swimming in pools, walking near pools, standing on the subway platform, crossing 86th Street, stepping off of boats, using mall restrooms, getting on and off escalators, driving on country roads while arguing, leaning on large windows, walking in parking lots, riding Ferris wheels, roller-coasters, log flumes, or anything called “Hell Drop,” “Tower of Torture,” or “The Death Spiral Rock ‘N Zero G Roll featuring Aerosmith,” and standing on any kind of balcony ever, anywhere, at any age.

Lead her away from Acting but not all the way to Finance. Something where she can make her own hours but still feel intellectually fulfilled and get outside sometimes And not have to wear high heels.

What would that be, Lord? Architecture? Midwifery? Golf course design? I’m asking You, because if I knew, I’d be doing it, Youdammit.

May she play the Drums to the fiery rhythm of her Own Heart with the sinewy strength of her Own Arms, so she need Not Lie With Drummers.

Grant her a Rough Patch from twelve to seventeen. Let her draw horses and be interested in Barbies for much too long, For childhood is short – a Tiger Flower blooming Magenta for one day – And adulthood is long and dry-humping in cars will wait.

O Lord, break the Internet forever, That she may be spared the misspelled invective of her peers And the online marketing campaign for Rape Hostel V: Girls Just Wanna Get Stabbed.

And when she one day turns on me and calls me a Bitch in front of Hollister, Give me the strength, Lord, to yank her directly into a cab in front of her friends, For I will not have that Shit. I will not have it.

And should she choose to be a Mother one day, be my eyes, Lord, that I may see her, lying on a blanket on the floor at 4:50 A.M., all-at-once exhausted, bored, and in love with the little creature whose poop is leaking up its back.

“My mother did this for me once,” she will realize as she cleans feces off her baby’s neck. “My mother did this for me.” And the delayed gratitude will wash over her as it does each generation and she will make a Mental Note to call me. And she will forget. But I’ll know, because I peeped it with Your God eyes.

Amen.

(Photo: flavorwire.com & American Express)