Archive for January, 2008
No Room at the Inn
Wednesday, January 30th, 2008
Shipping and Receiving 101
Last month, my 90-year-old mother-in-law suffered a stroke. She was already wheelchair-bound after fracturing her hip and wrist five years ago. Her health is now impaired in many ways.
For the past month, she’s been in a skilled nursing facility many miles away. We’ve been working to transfer her to a facility closer to our home. The social worker at her present location did a stellar job of locating a long-term care facility near us. She made the arrangements on the “shipping end.” She contacted the “receiving” facility, made certain that a bed was available and arranged for an ambulance transport.
That’s the good news.
On the afternoon that the transfer was scheduled to occur, we called to confirm on the receiving end. That’s when we were told that they had given away her bed. First they claimed that they had not received the insurance paperwork. Then they confessed that their census had shown an open bed because someone had neglected to do the data entry to reflect a new admission.
Abracadabra! Once the data entry was done, the open bed disappeared, just like magic.
When we asked what would have happened if the ambulance had arrived, their answer was, ‘We would have sent her back.”
After much discussion, they promised that a room would be available by Thursday or Friday at the latest. When I called on Friday, I was told, “We don’t have no bed.” It turned out that the patient who was being discharged was a male. Why they could not have determined his gender prior to my call is a mystery to me.
Over the course of the past week, we’ve been caught up in an endless loop between the insurance company, the medical group and the facility.
Do you have an admissions horror story to share?
Unhappy Birthday
Wednesday, January 23rd, 2008 
Last year was a milestone birthday for Paul. We planned to make it special. I shopped at the party store. I bought fun favors, joke presents and decorations. The festivities included our customary “double date” with our moms.
All was going well until Paul leaned over to cram his mother’s wheelchair into the trunk of his car.
Game over!
There was the Birthday Boy, doubled over as herniated discs shot spasms of pain up and down his back. Late last year, he had back surgery.
This year was supposed to be different. In 2008, I swore we’d have twice as much fun to compensate for last year’s birthday meltdown.
Strike two!
This year, we didn’t even make it out of the house. When his mother called to wish him “Happy Birthday,” her voice sounded funny. She said she had trouble writing his card.
In a tragic instant replay, Paul’s mom had a stroke on his birthday. We spent the entire day and night in the emergency room. The medical transport guys grew impatient with us as we struggled to remove 84 bobby pins from her hair. They thought we were trying to make her pretty. They didn’t understand that we were trying to get all that damn metal out of her hair before she went for her MRI. I didn’t know whether to laugh or cry. I did a little of both.
The days that followed have been difficult for everyone concerned, especially for Paul’s 90-year-old mother. She hates where she is and she wants to go home. Time will tell.
Next year we’re celebrating Paul’s birthday on a different date.
Have you ever had a Birthday from Hell? How about a hospital moment that was tragic and funny at the same time?
January Newsletter
Monday, January 21st, 2008If you missed our January newsletter, you can read the archived version by clicking here.
Blink Once For Yes: Meet Jean-Do and Kate
Saturday, January 12th, 2008
If you think writing a book is difficult, try blinking it one letter at a time.
Based on the compelling true story, The Diving Bell and the Butterfly stars Mathieu Amalric as Jean- Dominique Bauby, the former editor of Elle magazine. Paralyzed by a rare brain stem stroke, Bauby dictated his 1997 memoir by blinking his left eye, spelling words out one letter at a time.
Held hostage in his own body by locked-in syndrome, Bauby stays sane by clinging to what is human. What’s left is his imagination and memory.
This film is heartbreaking but not depressing. It is intensely moving and life-affirming without being sappy. In French with English subtitles, the film is told from Bauby’s point of view. We hear his thoughts which are often testy. Bauby is sarcastic, irreverent and sometimes hilarious.The camera allows the audience to see everything Bauby does from his vantage point. If flashing lights and sweeping camera shots give you motion sickness or a migraine, then this film is not for you.
Sadly, Bauby passed away shortly after his book was published, but you can have the privilege of witnessing another miracle in motion in the person of my friend Kate Adamson. In 1995, Kate suffered a pontine stroke at the age of 33. Kate, a beautiful, fit mother of two young daughters, was suddenly paralyzed from head to toe, her body hijacked by locked-in syndrome. Like Bauby, Kate’s only way to communicate was by blinking.
The mesmerizing tale of Kate’s journey from locked-in syndrome to national hero involves commitment, determination and a strong support system. In 1997, Kate addressed the U.S. Congress to promote stroke awareness and appeal for research funds. She has appeared on local and national radio and television, including the Larry King Show, is a spokesperson for American Stroke Association and sits on the board of numerous other associations.
Kate founded the Back on Track support group to help other stroke survivors. Her inspirational keynote addresses at conferences and corporate conventions move employees from paralysis to power. She entertains and educates members of churches and civic groups to focus on abilities not on disabilities.
Kate engages her audience in hilarious one-handed activities to bring home her message of “Appreciation before Accommodation.” Together with Tom Cantrell, Kate mixes up a brew of humor and magic to hold her audience spellbound. Tom, who is visually impaired, combines administrative law experience, including emphasis on ADA issues with 30 years of human resources experience. He engages his audience with funny and mystifying street magic. They learn to perform some of their own magic to take home and amaze their families.
To learn more about Kate’s spellbinding story and her inspirational work, read our blog post about her latest book, Paralyzed but Not Powerless or visit KatesJourney.comTo hire Kate and Tom to bring heart and humor to your next event, contact Kate at Kate@katesjourney.com or call 1-800-641-KATE.
Paralyzed but not Powerless
Wednesday, January 9th, 2008
A Review of Paralyzed but Not Powerless: Kate’s Journey Revisited
Imagine this: One day, you’re the 33-year-old mother of 3-year-old Stephanie and 18-month-old Rachel. You’re a beautiful, healthy fitness advocate. The next day, paralyzed from head to toe, you are the one wearing diapers. You feel like a 33-year-old fetus as life goes on around you. You cannot hold your children. In a few short weeks, your baby will call her nanny “Mommy.
In 1995, at the age of 33, Kate suffered a pontine or double brainstem pons stroke which left her totally paralyzed, unable to eat, drink, talk, move or initially even blink. She breathed through a tube placed in her throat, and was fed through a tube surgically placed in her stomach. As they operated on her to insert the tube, she felt them cutting open her stomach. Through it all, she was able to feel excruciating pain, but unable to cry out.
Follow Kate in her courageous journey from her glass coffin to her homecoming and back in the driver’s seat. Journey with her through 50 days in intensive care, months of agonizing rehabilitation, battles with insurance companies and more.
In his observations From the Other Side of the Bed, Kate’s husband Steven Klugman shares practical information as well as the raw emotions of a relentless advocate fighting to save the life of his beloved wife.
Steven is an attorney. He offers sound advice for dealing with medical professionals and insurance case managers. But he is, first and foremost, a husband. Over Kate’s bed, Steven posted a sign in large handwritten letters. His message: “THERE IS A HUMAN BEING LYING HERE. SHE UNDERSTANDS WHAT YOU SAY. PLEASE TREAT HER AS A PERSON.”
Kate’s remarkable recovery reads like a page-turner novel, a thriller that keeps you on the edge of your seat. It also contains critical information, including Steven’s chapter on How to Survive a Medical Crisis, and medical commentary by world-renowned neurologist Dr. Jeffrey Saver. It features the text of Kate’s address before the U.S. Congress on April 23, 1997. Also included are letters to Kate and ten tips from psychologist Judith Carl, Ph.D. to help children cope with parental adversity. The Resources section lists contact information for medical, support and advocacy groups.
The Appendix for Other Stroke Survivors includes sections on:
- insurance concerns
- rehabilitation and recovery
- stroke and emotions
- stroke and divorce
- stroke warning signs
- aphasia
In this moving testament to iron will and resilience, Kate shares what she learned about the difference between giving up and letting go. Today Kate is still unable to move the left side of her body. Yet she is a tireless advocate for people with disabilities and an inspirational model for us all. Kate is a living example of the power of focusing on what we can do not on what we can’t do.
Read more about Kate’s life-changing work with corporations, schools and community groups in our blog post Blink Once for Yes.
For your convenience, you can find Paralyzed but not Powerless in the caregiving section of the Midlife Menu Amazon Associate store.