Family Birthday Party for Woman Who Won't Remember It

Published in the Spring 2018 issue of The Auburn Circle.

The game that we counselors played for weeks that year at camp was this; theoretically you find your perfect person, except they have one major flaw—they sleep 20 hours a day or are covered from head to toe in thick black hair. Would you be able to make that flaw work in the relationship or would it break it?

“Make it or Break it? … one day, he gets Alzheimer’s,” the zip line operator turns to me and asks. My body reacts in a small flinch as he says the the word.

Alzheimer’s, a form of dementia, is a devastating disease that causes declines in mental ability so severe that it makes functioning in everyday life impossible. In its early stage, it can present itself as a forgetfulness of events or a difficulty in remembering certain words. As it worsens, it can swallow nearly all the words and memories of a person. It steals the names and faces of children. It robs one of the ability to change into pajamas. It erases your history.

Such a state is not a normal part of aging. It worsens over time. It has no cure.

On a Sunday in October, my family had a birthday party for my 90-year-old grandmother, Amanda. My mother got the house ready for days—pulling out the gourds and pumpkins and warmly toned decorations. My father did the same with the yard—landscaping in autumn colors with purple flowers and mulch and removing leaves from the grass. I made a slideshow that made it up to about 1954, with a hint of the 60’s to show my mom at 5 years old —an age a quarter of mine.

A crowd of us gathered around as the pictures lit the screen. Amanda’s beauty was not unlike that of a classic movie star, with a miniscule waist of the ages and dresses that emphasized her poise and grace. In every photo she seemed the most put together, the most stylish, the most beautiful. Trumpets filled the air as “In the Mood” by the Glenn Miller Orchestra played in the background, and when a photograph of Amanda looking over her shoulder as a bride came up, I imagined her face forming into a light, sly smile and dancing to and fro to the beat. She would grab the hand of Ray, her husband of scarcely an hour, who was still in awe that this lady in white silk was his partner for life. They would move with such speed and turn with such grace, that today’s trendy, college “swing dancers” would reconsider if they were actually dancing at all.

Amanda was the oldest of six children. She was only 12 when her father died of pneumonia after walking miles on a rare snowed-in day in Georgia to check on his elderly father, my great, great grandfather. After that, she became much like a mother to her siblings. Her early, forced by circumstance, maturity somehow showed itself in nearly every group picture of her family. But to see the picture of Amanda with her siblings playing outside with barefeet and crazy, tousled hair, was to see her as a young dear soul without responsibility and the qualities of a dignified lady yet. It felt a rare sight.

The room filled with sighs and exclamations of delight at each picture. Two of them were almost famous in our family: the colored engagement picture of iconic Amanda, with bright red lipstick and sweeping hair looking seductively to her right and the black and white one of Ray in a small smile and army uniform. What a pair! Both so young. Both so old. The epitome of the World War II era: young eyes learning the lessons of old souls as they see fallen brothers and scour the newspaper every day for loved ones’ names.

As those two pictures appeared next to each other, like they always should be, Amanda unfamiliarly said, “Oh, don't they look good,” as if commenting about two complete strangers.

There’s a cognitive model of Alzheimer’s called the “GEMS” that likens each new level of severity of the disease as a beautiful gemstone, and Amanda is probably a Ruby. Ruby is the fifth gemstone out of six, and the sixth, the Pearl, is when the diseased soul is very close to death.

An appropriate conclusion to make: Amanda is close to death—at least, a gemstone away from it.

Back at summer camp, I lift my camera, taking pictures of the two small girls screaming down the zip. Finally answering the “Make It or Break It” question, I say “Well, I’m probably going to get Alzheimer’s when I’m older, so for sure ‘Make It.’ I can’t hold that against him.” Both of the 7-year-old zippers are in neon, and I know despite their dramatics, they’ll race back up the hill afterwards in hopes of there being enough time to go one last zip.

“Shoot, Squirrel Power, really?” Hearing my camp nickname, I briefly look at him before pressing the viewfinder back to my eye and firing off a dozen more images. I wonder if he knows my real name or if he’s like the rest of the kids and is clueless of my existence outside of this place. I struggle to remember his. “I mean, yeah. Three of my grandparents had it, and it runs in the family so…,” I trail off and help unhook one of the girls from the wire as she reaches the end. She has to stand on her tip-toes to meet the ground. Once broken free, both run with discomfort and surprising fortitude in their harnesses, holding the metal hooks in their hands.

“Dang, that sucks,” he says. I see that we have no future. It is a deal-breaker for him.

On the day of the Amanda’s party, it went from pleasant weather to low 40’s, which even for the Alaskan relatives was brisk, the wind pushing itself through any amount of layers and prodding our skin harshly. My dad’s neatly groomed yard was strewn with branches, and my old Chevy truck in the yard, the intended backdrop for family pictures, was lonely for most of the day, except for its bales of hay waiting to be climbed. My grandmother didn't know anyone’s name. I’m not sure if she remembers the party anymore.

What’s the point of having a birthday celebration for someone who won't remember it? Why put in so much work when she’ll never know? Why celebrate another birthday of someone who has had so many, they cannot seem important anymore?

My sister has a daughter named Caleigh. When she turned two, ten of us went to the Georgia Aquarium to celebrate. Her father lifted her on his shoulders, and she was silhouetted by the glass-walled sea of blue in front her. She screamed like the waters would swallow her whole and laughed relentlessly when a beluga whale came by repeatedly, seemingly rubbing itself against the glass in front of her, like an affectionate cat rubbing its neck on your leg. The beluga must have known it was her birthday.

Caleigh is almost three now. She still remembers looking up and seeing the ocean instead of the sky. When she is five will she? How about when she is ten? Most adults don’t remember anything before the age of three, and at the age of seven, most children’s earliest memories fade. It’s called “childhood amnesia.” Therefore, I venture to say that in four years, Caleigh will forget three years of her life. Yet we still go to the aquarium. Yet my friend’s baby niece still has a Bee-day party with yellow and black striped gift wrap covering presents that she will only find interest in for a few months at tops. No one can argue that the laughter and celebration of a cherished soul is not worth it for that moment alone. Any conversion of such a delightful time into a memory, is but another gift in the stack of them at the table by the door. Perhaps the most valuable gift at the table of rattles and pastel-colored clothes.

On that day in October, my grandmother, like a character in Oz who had lost her tongue, held her sister’s hand for an hour. It was familiar to her.

She got hugs all day from those that had come after her in lineage. That’s at least 37 hugs, for each of the people that enthusiastically came from five miles down the road or from as far away as Alaska, where my aunt and cousin have lived for over fifty years.

She felt close to her husband again as she saw a picture of herself picking something out of his teeth to the tune of “Moonlight Serenade.” She admired him when dressed in his uniform, looking smart and young and too small for war. She fell in love all over when he sat in a 1940‘s version of a speedo on a sailboat. They were on their honeymoon, and she smiled.

She was told “I love you” after “I love you” after “I love you” until she couldn't forget it by the next time it was said.

On the GEM scale of Alzheimer’s disease, Rubies tend to miss subtle hints, need guidance or help to move, lose all previous skills, forget what to do with objects they are holding, and are at higher risk for falling due to worse vision and balance. At her most recent Thanksgiving, Amanda put mac and cheese on her fingers, instead of in her mouth, because she forgot that’s where it went. Then she tried to wipe off her mysteriously slimy fingers with food instead of a napkin, because she forgot what a napkin was for.

Also, according to the GEM scale, Rubies can understand magnified facial expressions and voice rhythms, like a crowd singing “Happy Birthday.” They are able to pick up and hold things--like people, when they hug you. Rubies can usually sing, hum, pray, sway, rock, clap, and dance, like Amanda now does at church. She still knows every single word of “How Great Thou Art,” and she raises her hands in worship. This may be because Rubies have lower inhibitions, and thus, a higher sense of freedom. She never would have been bold enough to worship so openly when she used to be bound by other’s opinions of her.

When Amanda becomes a Pearl, the world may see her as a clam, but the scale argues that she is a hidden treasure. I argue the same. At this point in the description of levels, the “GEM” scale mostly lists good things that can happen because most of the bad is already expected or too horrific to mention. Pearl’s bodies catch up with their minds and are decaying essentially. Apparently, the best gift to give at this stage is letting them know it is okay to go. Why expand it any more than that?

Even with all systems failing in the battleship of a Pearl, there are often odd and remarkable glimpses of clarity. It is not uncommon for them to become alert and connect deeply when nearing the end. This happened for my paternal grandmother, Granny Jean. She went her last year without speaking coherently because of the disease. She was spoken to frequently by her family, especially her devoted husband who moved with her to the nursing home, but she responded only in sounds of gibberish.

Despite this, two very notable things happened the day Granny Jean died:

1. She died.

2. She spoke.

On that day on the way to hospice, my father rhetorically asked, “How are you today?” to the woman he had loved every moment of his life.

And his mom, who was closer to death than the decades she had spent living, said with clarity and ease, “I’m great, son. Why wouldn’t I be? I’ve seen everyone I love today.” As she was driven to the place she would die in a few hours, my grandmother spoke for the first time in nearly two years. Her final words were, “What a great day.”

That's where Amanda is headed. Having no regard for chemistry, the Ruby will transform to a Pearl, like so many others have before. She will become immobile and lose the ability to heal. She may catch a cold, or a cold may catch her and take her away. Her brain tissue will continue to shrink, as she literally “loses her mind.” But every loss has been an unknown bargain as they have brought forth great freedoms. She has never been more mesmerized by autumnal leaves than she has in these last years. Just after the yellow leaves of one tree passes by her car window, she starts with shock at the sight of new red foliage as if every tree is the most beautiful thing anyone's eyes could ever witness—next to the sky, of course, which is a masterpiece far surpassing any art human hands could make.

To watch a loved one descend into the darkness of Alzheimer’s is a truly painful ordeal. But we have not lost her. She is not slowly fading behind thicker and thicker mist like one might presume. She is becoming lighter and lighter, spinning in a field of orange leaves under the bluest sky, inviting you to come with her, and all you have to do to join, is notice her. Notice her when others find it too difficult to try. That, dear troubled afraid world, is something not to fight, but to cherish.

So we bring the guitar; we buy the fancy cake; we sit and laugh over old photographs; we all bundle up for five minutes to take a picture with the truck and the cold; we tell of how we love college to those older and we feel thankful that they care; we celebrate the hell out of Amanda Hulsey Thompson who has Alzheimer’s and who is 90 and who we will never let forget how much we love her and how she is worth every ounce of celebration.

And Amanda will hold my hand when it’s all ending and turn to her sister and say about me, “This… this is my girl,” and I won’t cry even though I want to, but smile because I’m hers and I’m my grandfather when I hold a camera and they’ll have a-whole-nother lifetime in me.