Reading Group Guide
1. Meg’s mother and step-father both suffered from dementia. What seemed to be some of the most challenging aspects of caring for them and what advice might you give for those who are currently caring for loved ones with Alzheimer’s disease?
2. As the Boomer Generation cares for their ailing parents and faces their own approach to old-age, what steps can they take to prepare themselves and their families for what’s to come?
3. What do you think the care-giving industry needs today in order to successfully handle their
increasing demand while still offering the best support and care for their patients?
4. Addie & Walter were in a different financial situation than the average aging individual. In what ways did this help and hinder their care?
5. What advice might you have for those children that face the difficult decision of keeping their parents at home or placing them in assisted living or nursing home care?
6. As with many aging individuals with dementia, the confusion brought about a tremendous amount of frustration and physical aggression in Addie and Walter. They also faced alcohol and sexual issues. Have you had to deal with similar issues with your parents or loved ones?
7. Meg Federico uses humor throughout WELCOME TO THE DEPARTURE LOUNGE when describing some of the emotional and trying experiences she had while caring for her parents. Did a sense of humor help you while caring for parents or other loved ones?
Read an Excerpt
Chapter One
I DEMAND AN AUTOPSY!
I was sitting at my desk plowing through bills when the phone rang. My stepsister, Cathy, never called unless we had "problems." Her father, Walter Huber (age eighty-two), and my mother, Addie Henry (age eighty-one), after a dramatic and sometimes bruising courtship, married a few years ago. Not one of the eight offspring (me and my four siblings, Cathy and her two) in our newly blended family was pleased about this union, but there was nothing we could do about it. After all, our parents were grown-ups.
At present, Addie and Walter were escaping the New Jersey winter, vacationing in West Palm Beach, Florida, where, Cathy informed me, Mom stumbled and fell and hit her head on the curb. A stranger, seeing the two old people in a state of emergency (a fairly common sight in Florida), kindly called an ambulance for Mom and packed Walter into a taxi.
The ambulance paramedic, recoiling from Mother's ninety-proof breath, scribbled ETOH all over her medical forms. ETOH is medical jargon for ethanol. In Mom's case, it meant martinis.
While Mom was out cold, the ER staff tried to pry information out of Walter, who was upset and couldn't remember anything. Suddenly, Mom sat bolt upright on the gurney and yelled, "I demand an autopsy!" before passing out again.
"I'm not getting an autopsy!" Walter roared. "You have to be dead to get an autopsy!" Apparently, after the nurses got him calmed down, they shipped him off to an emergency Alzheimer's unit (which they also have in Florida), where he had been locked up for three days before he finally divulged Cathy's number. She was now on her way to retrieve him.
I called St. Stephen's Hospital and finally got Mom. "Oh, hello, dearie," she said brightly, as though I just happened to call as she bounded off the tennis court. "Isn't this a bore? I could leave right now, but to be safe I thought I'd get a few tests done." She sounded peachy. "A lamp fell on my head at the hotel, but really it's nothing. A big old Biedermeier lamp!" Like any good liar, she added the Biedermeier bit to make her story plausible. The facts were irrelevant; I wasn't going to win any arguments against that lamp.
Watching my mother for the past few years had been a lot like watching a blindfolded lady ride a unicycle on a tightrope. You can't take your eyes off her as she wobbles up there completely unaware that she's fifty feet above the ground because she can't see. And if you attempt to point out her peril, she thinks you're trying to ruin her career. Just when you're sure she's going to plunge to her death, the blind lady yanks the bike upright. "See?" she says. "You worry too much."
I did worry. I'd been worried for years, because one day Mom was going to fall. It would be a terrible accident I could not prevent, and she might just fall right on top of me.
Then later that same day, Cathy called again, from the Sunshine State. Our problems were getting worse. "You better get down here. This hospital is not exactly Columbia-Presbyterian, and frankly I have my hands full with Walter." The emergency lockup ward for stray dementia folks was like a holding cell. Walter's suitcase had been ransacked and his wallet emptied, and he was so distraught he'd forgotten how to use the toilet.
"The food here isn't as good as the other places," he confided to Cathy, presumably referring to the swanky four-star resorts he and Mom patronized. "And that fellow is not very interesting," he said, indicating his roommate, who could only burble.
I lived in Nova Scotia, a thousand miles from Mom's house in New Jersey and a lot farther than that from West Palm Beach. I had a job (fund-raising), three children (a son, fourteen; two daughters, twelve and eleven), a husband (Rob), and a dog. My mother was going blind, and as she gradually lost her eyesight she began to drink even more heavily than she had before. Sometimes Walter drove her to the ER, where she got stitched up and was kept overnight for observation. Sometimes an ambulance was required.
I rarely heard about these accidents from Mom because she didn't want me to know. One of her remaining gossipy friends would report the gory details of each debacle with keen enthusiasm.
"I'm glad your father didn't live long enough to see this!" declared my informant.
I didn't bother to point out that if Daddy weren't planted in the family plot, Mom would not be running around with Walter.
If the situation sounded bad enough, I jumped on a plane. But it had to be sufficiently dire to warrant the turmoil: getting time off work, lining up babysitters, convincing my skeptical spouse we had to spend the money. Of course, it's very hard to tell, long-distance, how bad things really are. My half sister, Alice, lived in New Jersey not that far from Addie, but I hated to ask Alice to shoulder Addie's predicaments. (Alice had recently dealt with her own mother's illness and death -- she'd fulfilled her filial duties.) My brothers and my sister all lived a plane ride away; we had to jump through hoops and pass through time zones to get back home. I was usually the first responder on the crisis management team because my flight was the shortest.
But back to West Palm Beach. First the good news: Walter was diagnosed with Alzheimer's disease. That he had it wasn't good, but finally a doctor had said so. Frankly, I'd always found Walter scary. One minute he was calling Mom his "beloved Bride," the next he was shaking his fist at her, red-faced and swearing. If I was around, he'd yell at me, too. And he drove on the wrong side of the road. When I tried to talk to Cathy about him, I got nowhere. "He's always been like that," she'd say. I naïvely thought that an expert medical diagnosis would change things for the better. Now, instead of running around loose, Walter would be managed. By experts.
The bad news was that over the course of the next few days, my mother went from her bossy self to an "unresponsive state," and the hospital offered no explanation. I hit the phone lines and frantically briefed my brothers and sisters, choreographed a quick departure (babysitter, dog walker, tuna noodle casserole), and got on a plane. As the jet thundered down the runway, I had no idea if, on the return trip, I'd be drinking martinis with Mom in executive class or accompanying her home in a box.
I had a five-hour layover in the Continental terminal at Newark Airport, which is not my favorite place because years ago, quite possibly in the exact spot where I sat waiting for my flight to West Palm Beach, my father dropped dead of a heart attack. I was getting married and on the day before my wedding, my oldest brother, William, was flying in for the big event. Dad invited me along for the ride out to the airport, but I didn't want to get stuck in the backseat of the Buick while he drove Mom crazy by telling her how to drive. The whole reason she was driving in the first place was that Dad couldn't see an elephant if it was seated on the dashboard. On the other hand, Mom was so accustomed to his insistent navigation, she couldn't get anywhere without him: Dad hunching forward in his seat telling her to watch the road, Mother sighing dramatically to let him know she was just letting him think she was taking orders -- I couldn't stand it.
So I told Dad I had a few last-minute bride-type errands -- and while Dad was dying, I was in a department store buying a beige slip.
When my stupid errand was finished, I sat drinking tea in the kitchen with Frances, the black lady who had pretty much raised me. She fiddled with cut flowers for the guest rooms, humming, "Loh de doh," under her breath, as she had for as long as I could remember. I hummed that song myself sometimes: Loh de doh. "They must have hit traffic," I said to Frances.
Then William called to say that Dad had had a heart attack. Airports have defibrillators stationed all over the place now, but twenty years ago they did not.
"It doesn't look good, honey," he said from a pay phone.
For years, Dad had never gone out of the house without a vial of nitro tablets in his pocket, but in the end they didn't save him. Who knows if he even had time to get one into his mouth? I thought of him hurrying down the concourse with his crookedy old-man walk and then falling, collapsing, while people like me looked on.
Maybe those people still tell the story about the time they saw the old man drop dead in the airport.
My mother didn't miss a beat. By the next morning she had a huge mess on her hands because cases of wedding champagne were being delivered at the back door, as the first of the funeral flowers were arriving at the front. Confronting the real disaster -- namely, life without Dad -- would have to wait. The rest of us could afford to go numb, but Mom had to move into action.
She stationed herself in the dining room with a yellow legal pad and a very sharp pencil, her blouse crisp, the stiff collar framing her face. The platinum wedding band on her finger looked obvious and sad. As I slid into a chair, Frances placed a hot cup of coffee in front of me. We didn't say a word to each other, because those were the dining room rules.
Mom tapped her pencil and frowned at her long list. She must have figured that Dad would die first; he was so much older than she was. She had probably planned the funeral years ago or at least thought about it, because she was big on planning ahead. Looking up at me, she jumped right in.
"Darling, your father's favorite suit, the blue pinstripe he wanted to wear to your wedding? It's fresh from the dry cleaner. Would you mind, terribly, if he was buried in that suit?"
"Of course not, Mother."
"Now, the dress I was going to wear to the wedding is navy and it isn't low-cut, really. It's just as appropriate for a funeral, so would you mind if I --"
"Of course not," I said. Mother gripped her pencil with both hands, before releasing it to target another item.
"Darling, the wedding caterers? Well, I asked them to handle the funeral reception. They're all set to make the tortellini and the --"
"That will be fine," I said, as she checked that item off her list.
"And if we slice it in the kitchen and serve it directly on plates, no one will recognize the wedding cake."
I gulped. I did not want those mourners eating what they thought was just some nice white cake! My father was dead and my wedding was canceled. I wanted to stand on a cliff and throw the cake -- all three layers, plus the plastic bride and groom -- into the ocean while everyone watched and felt sorry for me.
"Of course you can, Mom," I said.
"About your wedding, dear -- it's terrible. Your father would be so distressed about it, if he knew." Mother gazed at me tenderly, and I felt the tears well up. "But it is really so convenient that everyone is already on their way. Saves a lot of phone calls." I choked on my coffee.
Within a day, the entire event had been transformed from wedding white to bereavement black, with the exception of one small detail. I couldn't reach the wedding photographer, who was probably out taking pictures of some other bride and groom, who'd never know how lucky they were.
"Candid Shots of Dad's Funeral will look nice on your coffee table," said William as he chewed on a slice of ham. Funeral hams were now arriving along with the flowers, and Mom sent the champagne back. "Tasteful black leather, gold lettering, and the date -- now, wouldn't that be a conversation piece?" he asked through another large mouthful. In our family, everyone eats and makes wisecracks rather than messy displays of grief.
"That is not funny," I told him, but I laughed.
Of course there is no such album, because I managed to cancel the photographer at the last minute. Then, figuring there was no point in waiting, Rob and I ran down to City Hall and got married. In lieu of a celebration, my entire extended family -- all seventeen of us -- descended on Black's funeral home.
Every room in the converted Victorian house displayed caskets, discreetly backlit and adorned with real flowers. Gleaming wood and polished brass created a corporate atmosphere. We chose the "Executive," which seemed fitting for the businessman my father had been. On the day of his viewing, dressed as though ready for a day at work, he looked a lot like he was lying in a large desk drawer.
The grandchildren feigned terror at the sight of a dead body, but poked at Dad's face when no one was looking, then climbed underneath the coffin, where they played comfortably out of the way in a world of their own.
The reception after the burial was crowded and noisy. People juggled their drinks and plates of tortellini, salad spilling over the edge. But Mom stood in her navy-blue dress, smiling and nodding with a polite disinterest that deflected the slightest intimacy. Without Dad, Mom was stranded. Once or twice I saw her eye the crowd, exasperation crossing her face: Now, where has he gotten to? Then she remembered, and her shoulders sagged. A gloss of manners and poise held her together so effectively that my cousin thought Mom didn't care. But, to me, those sagging shoulders said it all.
And poor Rob -- as he ate his incognito wedding cake, people kept pumping his hand, saying, "Congratulations, we're so sorry."
Now I wish I had a few photos. Just one or two.
Frankly, there are some events that you simply cannot be prepared for -- and this trip to Florida would soon prove to be one of them. When I landed in West Palm Beach, my luggage did not. I stepped into the warm, balmy air with nothing but the clothes on my back. I should have seen it as an omen. Losing my belongings would be nothing compared to the chaos of the next few weeks.
When I got off the hospital elevator, a nurse stood staring at the floor, while a doctor waved a chart in her face yelling, "After he got stitched up, he was supposed to go back to jail!" Dirty linens piled up in the corners, garbage cans overflowed, stacks of charts at the nursing station threatened to collapse. Families crowded around doorways, straining to see the relative on the bed. A young woman in a blue uniform dragged a laundry bin behind her, bumping into walls. A teenager pushed past her on a skateboard. Phones rang, monitors beeped, and televisions gabbled.
Mom was prone and immobile on a hospital bed crammed into a tiny room. Her face, collapsed in sleep, was unnaturally yellow from the disinfectant slopped over a blue-and-brown bruise that spread from her jawline past her ear, as though she'd gone down in a bar fight. I was dumbstruck at the sight of her, so broken and diminished. I lifted her hand to my cheek. Her nails, always filed and buffed, were dirty. In such a state of neglect, who would want to recover? I'd go into a coma, too.
Like Diana, the "People's Princess," Addie was the "People's Aristocrat," at least as far as the town of Oldhill, New Jersey, was concerned. When Addie arrived, tidy and tasteful in her alligator pumps, a silk scarf knotted at the collar of her sensible camel-hair coat, everyone from the gas station man to the bank president perked up. Her propriety, tempered with a conspiratorial twinkle, gave people a lift as she said her "How do you do" 's. Wherever she went, a murmur of appreciation followed.
"Your mother is such a lady," people said. "Real class."
The slit of a window let in the Florida sun, illuminating a couple of Trollope novels and a technical book on archaeology on the windowsill. Mom never traveled without her books. When she was younger, a whole suitcase had been dedicated to her vacation reading. Within the family, of course, the People's Aristocrat was harder to take, determined as she was to make us all into aristocrats, not to mention intellectuals, by insisting on strict codes of etiquette and comportment and a stiff reading requirement: a book per week or no TV.
The figure on the bed was not my brilliant, beautiful, know-it-all mother. This was vegetable Mom, who might never recognize -- or contradict -- me again. I shook her gently by the shoulder, but she was way down deep, beyond my tears. I sat looking at her for a long time.
Finally, I took a little walk down the hall and located the supply closet. No one noticed as I commandeered a mop, bucket, sponges, and rubber gloves. I dusted, scrubbed, and scoured Mom's room, as if by exorcising this tiny bit of territory I could get some kind of meaningful grip. I stopped periodically to look at Mom, but she remained unchanged and unreachable.
"They paying you to work here already?" said a familiar voice. William stood in the doorway holding a grocery bag, a cardboard tube, and flowers. He was a remarkable sight even to me, his little sister. Dressed in red boxing shoes, leather pants, a white formal shirt, and a silver-and-black-striped tie, he had a baseball hat pulled down over his eyes, and his skin had the purple cast people get when they spend too much time on airplanes. The mop clattered to the floor as I threw my arms around him.
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