Last Shall Be First

Amy and her parents, Jimmie Lou and Lou

Amy’s mother, Jimmie Lou, has Alzheimer’s disease. It’s sad watching a once vigorous woman slowly lose her mental capabilities. Jimmie Lou tells others that Amy is her sister even though Jimmie Lou doesn’t have a sister; she says she’s known perfect strangers “since they were little children;” and in past phone conversations has identified her husband of 53 years as “the man in the kitchen.”

Amy’s dad, Lou (yes, Amy’s parents are Lou and Jimmie Lou), is destined for the Caregiver’s Hall of Fame. If there is a Patron Saint of Caregivers, he or she will someday be dethroned by “Saint Lou.” Lou singlehandedly does everything for Jimmie Lou. He bathes her, dresses her, makes sure she takes her medicines on time (he carries a kitchen timer in his shirt pocket), makes sure “Bonanza” or “Gunsmoke” is on the TV, and that Jimmie Lou gets to her doctor’s appointments on time. He also keeps their house clean, does the laundry, researches new treatments and medications for Alzheimer’s and handles all of their finances.

As tragic as Jimmie Lou’s condition is, she has a child-like innocence that is both sweet and adorable.

Lou and Jimmie Lou live in a suburb of Las Vegas. Every day, Lou takes Jimmie Lou to a different casino buffet for dinner. On the last day of our recent visit, Lou, Jimmie Lou, Amy and I went to The Orleans. While getting her “appetizer” plate of shrimp cocktail, salad, beets and fruit, Lou noticed the dessert bar had only one slice of Jimmie Lou’s favorite pecan pie. Fearing the buffet didn’t have a replacement should someone else pick up the dessert, Lou got the plate with the pecan pie well before dessert time.

“This is for dessert,” Lou told a wide-eyed Jimmie Lou as he placed the plate at the center of the round table.

“Oh,” Jimmie Lou said forlornly as her excitement faded.

But like a rare, brilliant gem, Jimmie Lou couldn’t keep her eyes off the pecan pie. Thirty seconds to a minute later, Jimmie Lou reached over, pulled the plate with the pecan pie toward her and took a bite.

“That is for dessert,” Lou reminded her.

“Oh,” Jimmie Lou said forlornly.

Thirty seconds to a minute later, Jimmie Lou reached over, pulled the plate with the pecan pie toward her and took another bite.

“That is for dessert,” Lou reminded her emphatically.

“Oh,” Jimmie Lou said forlornly.

When he was ready, Lou left the table to get his and Jimmie Lou’s “entrée” plate. As soon as he was out of earshot, Jimmie Lou reached over, pulled the plate with the pecan pie toward her and took four bites before Lou returned.

“That is for dessert!” Lou reminded her more emphatically than before.

“Oh,” Jimmie Lou said forlornly.

Thirty seconds to a minute later, the waitress asked if Jimmie Lou was done with her “appetizer” plate.

“Yes,” Jimmie Lou said, “and you can take this one (the ‘entrée’ plate), too” as she reached for the plate with the pecan pie.

“No! She hasn’t touched that yet!” Lou told the waitress. “That (the pie) is for dessert!” Lou reminded Jimmie Lou.

“Oh,” Jimmie Lou said forlornly.

Thirty seconds to a minute later, Jimmie Lou reached over, pulled the plate with the pecan pie toward her and took the last remaining bite. Lou just sighed.

Thirty seconds to a minute later, Jimmie Lou asked Lou, “Are you going to get dessert?”

“The pie you just ate was dessert,” Lou answered.

“Oh,” Jimmie Lou said forlornly.

Spitting on the Face of the Disabled

A pet peeve of mine since I was young was people parking illegally in handicapped parking places. Now that I’m among the disabled, I see how vast the law-breaking is.

The Americans with Disabilities Act of 1990 “recognizes and protects the civil rights of people with … a wide range of disability, from physical conditions affecting mobility, stamina, sight, hearing, and speech to conditions such as emotional illness and learning disorders.” The Act was amended in 2008 to define a disability as “impairments that substantially limit a major life activity” such as “caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working” and “the operation of a major bodily function.” The ADA Amendment Act of 2008 states that “in enacting the (Americans with Disabilities Act of 1990), Congress recognized that physical and mental disabilities in no way diminish a person's right to fully participate in all aspects of society, but that people with physical or mental disabilities are frequently precluded from doing so because of prejudice, antiquated attitudes, or the failure to remove societal and institutional barriers.”

When doctors diagnosed me with Multiple Sclerosis in 1996, I knew there would be a time when I would need a wheelchair or mobility scooter to get around. I knew I would not be able to bound up and down stairs or leap over potholes or puddles of water. I knew I would need help getting in and out of locations and situations I never thought I’d have a problem with.

Most everyone I’ve come across has voluntarily helped me in some way when they’ve seen me. People regularly hold a door open for me, pick up something I’ve dropped, or reach for an item on a shelf above my head. I deeply appreciate the assistance; however I have an equal level of anger when people do not consider the needs of the handicapped when I or any other disabled person is not around.

Rarely does a week go by where I don’t see some violation of the Americans with Disabilities Act. When I took Amy and Nick to Lowell Observatory in Flagstaff, Arizona on July 24, 2011, one of the two handicapped designated parking spaces was covered by a construction-sized trash bin from Bleekers Boxes. It has since been moved, but why was it there in the first place? Obviously, whoever placed it there either was ignorant of Federal law or just didn’t give a damn about the disabled. Or both.

I’ve found hotels to be very problematic. Officials at the Edgewater and Colorado Belle hotels and casinos in Laughlin, Nevada were told by the Nevada State ADA Director Susan Thomas to renovate all the handicap accessible rooms to comply with the 2008 standards. Thomas did not know that the Edgewater and Belle have a free room for three nights monthly promotion. Because all the handicapped rooms were “being renovated under ADA order” I had to go to a different hotel and pay regular room rate. Because able bodied people could get a free room for three nights and I couldn’t, I was discriminated against.

The lone handicap accessible room with the roll-in shower at the hotel next door, the Aquarius, is on a smoking floor. I have no options for a non-smoking floor at the Aquarius.

The Planet Hollywood hotel in Las Vegas is even worse. When we stayed there in March 2011 because Amy was attending a three-day conference there, water from the shower spilled out onto the floor in the rest of the bathroom, making the shiny tile slick. Although I reserved a non-smoking room, on the desk was an ashtray and book of matches. I was given a “smoking optional” room and my reservation “was not a guarantee.”  And elevator doors would close before I could fully get my scooter-propelled butt in the elevator.

Overtime, these ignorances become comical. In 2008, Amy was the high-bidder for an overnight stay in a suite at the El Tovar, the 100-year-old hotel on the rim at the Grand Canyon. While finalizing the reservations, we told the representative over the phone that we would exchange the suite for a handicap accessible room on the first floor.

Working the registration desk the day we got there was this teeny-bopper girl no more than age 22.

“You’ll be in Suite 263 just up those stairs and down the hall,” she said bubbly. Note that I am sitting on my handicap scooter at the time.

“We reserved a handicap accessible room on the first floor,” Amy responded.

“We don’t have any suites on the first floor,” was the answer.

In my attempt to make things easier, I told the girl that we’ll take the suite on the second floor if she would direct us to the elevator. I got this “Lost in Space” blank stare.

In each episode of the late 1960’s television show, the robot would frantically wave its arms and say, “Does not compute. Does not compute.” That is what this chicky’s face was “saying” to me.

The owners of the El Tovar used the historic structure loophole in the Americans with Disabilities Act to get out of installing an elevator. After checking with the desk manager, she looked at me (remember I’m sitting on my scooter) and said “I’m sorry. We don’t have an elevator.”

“Then how does my scooter get ‘up the stairs and down the hall’?” I asked.

“Oh we have bell boys for that,” was the bubbly reply.

“You have a bell boy who can carry my scooter – WITH ME SITTING ON IT – up those stairs and down the hall?” I asked.

Once again, all I saw was “Does not compute. Does not compute.”

“That is why we need to have a room on the first floor,” Amy said.

And “Einstein” here replied, “But we don’t have suites on the first floor.”