Let's Play Word Association: “Healthcare”

You know what pops into my head if someone says “healthcare?” A smell. That antiseptic scent somewhere between rubbing alcohol and Lysol. I might see in my mind’s eye a shiny hospital floor or imagine the crinkly sound of exam table paper.

But this week in an e-newsletter all about healthcare, I came across a different take on what the term should mean. It involves church. An Episcopal church in northern New Jersey has started offering an “All God’s Children” service on the first and third Sunday of each month. The service is geared toward kids with disabilities, particularly autistic youngsters, those with varying degrees of attention deficit and also pervasive development disorders. It must feel like a miracle to parents of special needs kids looking for some help to feed their children’s souls.

Yes, there’s no doubt in my mind – this church is offering healthcare. Managing an illness or chronic condition can be an exhausting, 24/7 job. And I think especially if it’s a parent managing a child’s condition, there’s often little room for anything social or spiritual. Through the worst of it, even emotions get set aside while mom or dad manages a crisis on autopilot. (How unhealthy is that!) This church is offering families balance in their lives and holistic care. It can’t help but improve outcomes to pray and be embraced by welcoming church volunteers and, just for a short time on a Sunday morning, step away from the constancy of life with special needs.

What I really like is the church’s webpage for this special service. It’s children’s-church-in-a-box for any religious organization that would like to replicate the idea. There’s a full description, video clips of a service, and links to media stories about their novel idea. Anyone can download their 18-page operations manual (page 7- suggested gluten-free snacks; page 13 instructions for Joyful Noise volunteer - “…speak loudly into the microphone, as the kids will likely make noise throughout this segment. Repetition, call-and-response, and simple mimicked movements work well;” page 15- one adult in the Prayer Room and one at the door at all times. Make sure no child leaves the building without their parent.)

So, does your doctor ask how life in general is going? Does the practice offer a list of resources outside of physical healthcare? Does your own house of worship or school or workplace ask how it can accommodate health concerns and include special needs? If not, suggest they take a look at Christ Episcopal Church of Budd Lake, New Jersey. Now there’s a practitioner of good healthcare (without the antiseptic smell).

My Amazing Eye Transplant

No, of course not really. I've still got 20/40 vision and my new best friend, eyeglasses with progressive lenses. But what's taken me away from blogging these past two months has given me the gift of sight – a way of looking out on the world with new eyes and a new sense of wonderment.

It all started because my family needed help. And much to my surprise, asking for help has transformed my thinking.

If you know my family’s story, you know my son has had a long road dealing with neurological problems. My child has overcome some huge obstacles that made the arrival of his college acceptance letter in the spring a great victory for him. But obstacles still remain for him to be successful once he starts college just a few weeks from now. True to his tenacious nature, he got himself accepted into college and also accepted into a selective transition-to-college summer program for disabled students. Great program, big pricetag.

In searching for resources, I stumbled upon ModestNeeds.org and knew right away this was something special. Folks with one-time needs due to trying circumstances can post applications for very specific situations, and donors contribute directly to stories that strike a personal note. Each application is carefully vetted by the organization, which vouches for its authenticity. I had to work up the nerve to submit our application to Modest Needs. Our family has never asked for financial help. From anyone. Ever.

In the end, 44 people – family, friends and strangers – contributed more than $2,500 so that my son could attend the college transition program at Landmark College in Vermont. He just arrived back home with a huge binder full of practical information on how to navigate college coursework and a fabulous taste of dorm life that’s got him itching to move out of our house, like, yesterday.

As wonderful as the college transition program was, the lasting effect for me will be this lesson: that acts of goodwill and generosity can change the course of our lives and our outlook on life forever. For me it's been a lesson in generosity of spirit. I am just overwhelmed to see how much others value what's so important to our family- that our son gain independence and education to live up to his full potential. Anyone who has dealt with disability or chronic illness knows how easy it is to let expectations slip, because keeping them high sometimes feels like climbing Mt. Everest in lead boots.

Thank you to Modest Needs for this gift of sight (insight, actually) that we will never forget.

Click here to learn more about donating to Modest Needs.

Respect

Just yesterday, my family shared a touching moment while participating in a Memorial Day Service. My son was asked to play Taps, so we all went to hear his melodious tribute. I sat there watching the veterans speak of their friends that never came home. I never met any of these fallen soldiers, but was moved to tears as I watched the flag go up, heard the echoing bell rung after each name was read. It was very somber. Guns were fired as a salute to these men and their families and then Taps was played and echoed through the trees. I looked at the crowd, most were men in their 80's and their families, some holding back tears and others with red, wet eyes. There were only a few young people. Have we, as a culture lost perspective? How many veterans do we care for in our communities, never realizing the sacrifices they made to ensure our freedom? Our elderly population lived through amazing times and many would love to share their memories. I shudder as I remember outlining chapter after chapter for history classes in high school, but sit in utter amazement when hearing the stories from a participant of our great history. If we would only remember to take time and remember that those feeble hands that are crippled held a gun to fight for freedom, held and nurtured a baby, raised a family or built houses. No one will know the stories our elderly can tell us, unless we ask.

A Tribute to Mothers

I recieved an email this week and it reminded me not only of the responsibility and joy of being a mother, but the tremendous amount of respect that I have for my own mother. It is a blessing to see your mother enjoy not only her grandchilden, but her great grandchildren, as well. In our culture,the elderly are not always honored as they should be. Please take time today to honor your mother by telling her you love her and spending time with her. Often times, time is the best gift we can give to our mothers. If your mother has passed away, take time to honor her memory today. Please read this interesting viewpoint of what it is to be a mother as you think about your own.

Somebody said it takes about six weeks to get back
to normal after you've had a baby..... somebody
doesn't know that once you're a mother, 'normal' is history.
* * *
Somebody said you learn how to be a mother by
instinct ... somebody never took a three-year-old shopping.
* * *
Somebody said being a mother is boring....
somebody never rode in a car driven by a teenager with a driver's permit.
Somebody said if you're a'good' mother,
your child will 'turn out good'....
somebody thinks a child comes with directions and a guarantee.
* * *
Somebody said you don't need an education to be a mother....
somebody never helped a fourth grader with his math.
* * *
Somebody said you can't love the second child as
much as you love the first ....
somebody doesn't have two children.
* * *
Somebody said the hardest part of being a mother
is labor and delivery....
somebody never watched her 'baby' get on the bus
for the first day of kindergarten ...
or on a plane headed for military 'boot camp.'
* * *
Somebody said a mother can stop worrying after her
child gets married....somebody doesn't know that
marriage adds a new son or daughter-in-law to a
mother's heartstrings.
* * *
Somebody said a mother's job is done when
her last child leaves home.....
somebody never had grandchildren.
* * *
Somebody said your mother knows you love her, so
you don't need to tell her....
somebody isn't a mother.

Coping With Dementia

Two days in a row now, I’ve come across information on managing Alzheimer’s disease that taps into a couple connections wired deep in the brain: our capacity for words and our capacity for music.

First was a New York Times news item about author Lydia Burdick, who has written a simple book full of colorful pictures and large type specifically for memory-impaired adults. “The Sunshine On My Face” is one of three books she produced while caring for her mother who has advanced dementia. For a little while, at least, the connection between mother and daughter that had been slowly fading away opened back up when the two women shared story books.

The second reference popped up in a Philadelphia Inquirer article about the popularity of a capella singing among medical students who need a creative outlet to balance the rigors of their studies. The University of Pennsylvania’s UltraSounds (every one of these choirs, apparently, can’t resist a medical pun when it comes to choosing a name) brought nurses to tears at one adult day center when heretofore mute residents began singing along with “Silent Night” during a Christmas performance.

Right now, I don’t have an Alzheimer’s patient in my life. But these news items brought back that rush of primal love and connectedness I felt when I used to sing lullabies to my babies or cuddle them in my lap for a story. Life does indeed come full circle. And if a book or a song can bring a moment of connectedness and a bit of relief from the pain of caring for a parent who may not remember you anymore, God bless author Lydia Burdick and the singing of The Ultrasounds, The Doctor's Note and the The Transplantations for the joy they spread.

"If you're a worrier, this is not for you."

Did you see a guy in California had $50,000 worth of testing done on his DNA? He’s a professor of bioengineering who let his colleagues at Stanford University study his genetic information to see if they could predict future medical risks in a healthy person. According to the US News & World Report article, Stephen Quake now knows he’s got a 23 percent chance of developing prostate cancer but only 1.4 percent risk of Alzheimer’s disease. And more likely than not, the currently svelte and 40-ish professor will wind up fat and diabetic, with a touch of coronary disease. Or so say his genes.

What about you? Would you want to take a peek into your genomic crystal ball? Not me. I’m too suggestible. Every time someone says that in women heart attacks can present as gastric symptoms, I immediately start to burp. I’m already highly skilled at worrying about the problems of the moment. (Hey, doesn’t that run in families??) If my genomic test turned up something dire, chances are I’d feel more helpless than heroic.

My philosophy is that generally healthy living will stave off all sorts of ills. So (ignoring for the moment issues like folks interested in errant genes that could be passed along to future children) why know the specifics. I already know there’s breast cancer in my family tree, so I do all the right things: I get regular check-ups, I exercise, the kids were all breast fed, the thought of a breast lump inspires me to take that extra serving of broccoli. But the benefits of doing all that aren’t exclusive to breast cancer risk. All of the above might stave off other cancers, mental illness, heart disease and its related conditions, just to name a few.

Privacy and ethical issues aside, do you have the personality to live with the results of a test like Quake’s? He put it like this: “It doesn’t tell you you’re going to be happy or a great athlete,” he told the Associated Press. “If you’re a worrier, this is not for you.”

Ta-Da! Improve Your Doctor's Visits With This

We’re really excited to announce that we’ve posted our FREE Patient Loving Care Doctor’s Memo for you to download. The PLC Doctor’s Memo includes detailed instructions on how to collect your thoughts for your next doctor’s visit and put them down on paper. It will help you to think through exactly what you want to ask, describe how you’ve been feeling and determine next steps in your care. There’s advice on how to word your thoughts clearly and how to present them in the most efficient way so you get the most out of your time in the exam room.

There’s a blank memo you can use as a template, so you can fill out a new memo each time you visit the doctor and also save it on your computer for reference. A sample memo gives you an idea how it’s meant to be used. And the instructions will walk you through each step.

So let’s get started! Click here to get your own copy of the Patient Loving Care Doctor’s Memo.

And let us know what you think! Leave a comment. Give a suggestion. Most of all, put the memo into practice and let us know how it works out.