Keith Hall of Fairfax, VA recently wrote an indignant letter to the Washington Post, which was published on November 28, 2010. The letter was titled, “No way to treat an 80-year-old impaired woman” and described the Transportation Security Administration’s (TSA) pat-down of his severely incapacitated mother on a risky flight from Florida that was “deemed necessary” to move her closer to her children.
Mr. Hall’s mother is a wheelchair user who was accompanied by her daughter and daughter-in-law on this occasion. Because his mother could not walk though the scanner, according to Mr. Hall, “she was taken aside and her crippled hands…were checked for bomb-making residue. The officer had Mom lean over to check inside her Depends.”
Hall’s tale is an apt metaphor for the pitfalls of post-9/11 travel and long distance caregiving. In response to the experiences of individuals like Mr. Hall’s mother, TSA has reached out to people with disabilities and their families to further explain its screening procedures. The TSA website also provides useful travel guidelines for those with medical conditions and special situations. But commercial flying can be rough on family caregivers trying to navigate unpredictable procedures and conditions while protecting a loved one’s personal dignity.
At Caring from a Distance (CFAD), such journeys are familiar territory. As a non-profit organization created to serve the country’s seven million long distance caregivers, we understand that strenuous moments often arise as necessity poses difficult choices about when, whether and how to transition a family member from one place or level of care to another. Care may reach around the corner or across the country – but for travelers on this path, stress lurks at every marker, as the following examples show.
In 2009, Rosalyn McFarland, recipient of CFAD’s first Public Caregiver Award, described her care-travel experience in an e-mail that was reminiscent of Voltaire’s Candide:
I took my mother-in-law, who is a very spry 75-year-old, to New York to help me retrieve grandma. First, I made advance discount reservations for us both. When I printed up my itinerary, I found the departure was scheduled for the 14th of July not the 13th. The airline was very cooperative at a fee of $150 each, and a new flight ticket in the amount of $450 each. My wonderful advance tickets had cost me only $59 each, and I refused to pay a penny more.
My mother-in-law and I boarded the departure flight at 6:40 am and got to New York at 9 a.m. My sister-in-law decided to take the scenic route to the nursing home to pick up grandma. I got there five minutes before the transport who did not bring a travel wheelchair.
We waited an hour for him to figure out how to get a chair, only to find out that he was just sitting in his van sleeping. The case manager volunteered a facility chair and we were on our way to the airport with grandma — who had been medicated for the flight due to dementia and was coming back by this time.
The driver parked in the arrival area and had to circle the parking lot again. We were due to board in about 45 minutes. We got to the departure parking spot, got grandma out of the van, and they couldn’t print her ticket, because she didn’t have ID. I had only her Medicare card in my purse, and it had to be approved by a supervisor. That took 15 more minutes.
So now we all had tickets. My grandmother and mother-in-law are both in wheelchairs, and we are now running though the airport. Thank God for handicapped services. We bypassed the lines, got though the check area and headed toward the gates.
Did you know that there is a special little wheelchair that can board planes? Grandma was wheeled in, sat in her seat, and all the while my nervous mother in-law was giving directions . . .
After the flight landed the trip to the assisted living center outside Atlanta was nice, but getting there, that’s another story.
Travel for and with those with disabilities must be carefully planned. The Fisher Center for Alzheimer’s Research offers dementia caregivers some useful travel tips.
There may also be assistance for those in financial need who have medical issues. Just months after moving her grandmother, Rosalyn reached out for help to bring her ailing father to Georgia. A social worker at the Veterans Administration recommended the volunteer non-profit Angel Flight programs, which arrange free air transportation for any legitimate, medically-related need and helps people who are financially distressed, or who are in a time-critical, non-emergency situation due to their medical condition. For more information on the program, call 1-877-426-2643.
In some health crises, no commercial or piggyback travel may be viable. Andrew Levin, a co-founder of the Caring from a Distance Award program, called on his health insurance company for an air ambulance to fly himself and his wife to a New England hospital after her six-day critical care ordeal in a California hospital. The 12-hour door-to-door journey cost $34,000. But to his insurance company, it was far less costly than extended out-of-network care in California.
Distance family caregivers seeking to bring loved ones closer are rarely celebrated for their often heroic efforts to manage these complex transitions of care. At Caring from a Distance, we honor their resourcefulness and commitment. They constantly inspire us to reach out, share information and collaborate with others to lower the barriers they encounter.
For More Information:
Please contact Nora Jean Levin, Executive Director, Caring from a Distance, at [email protected].
Nora Jean Levin has served as Executive Director of Caring from a Distance since 2004. The 4th edition of her book, How to Care for your Parents (W.W. Norton, NY) was a 1998 Finalist in the “Books for a Better Life” Award sponsored by the National Multiple Sclerosis Society. She has advocated for better access to caregiver information since 1986.
(Photo: Piotrus on Wikimedia)
