You Get To Keep This
It is August 2014 and Pop is sitting in his wheelchair in the common room of the Memory Care Community. He is in the last stages of Alzheimer’s disease. His head is down and I am on one knee with my hands around his.
He begins to shake his head slowly, side to side. “I used to be smart, Bon.”
I place my hand over his heart. “Can you still feel the love in here, Dad?”
He leans back in his chair, straightens his shoulders and says, “Yes. Yes, I can.” He looks up at me, a smile in his eyes.
“Maybe that’s what being smart really means, Pop.”
He chuckles. “Yes. Yes. Maybe so.”
“You get to keep that love, Dad. No matter what.”
In the coming months, Pop and I will have this exact interaction many times. The silver lining of memory loss is that what helps once, often helps again and again.
It’s Fall 2010. After the long summer and muggy monsoon season, the heat has finally broken and the air outside is crisp. Pop is 86 and we are sitting in the waiting room of a neuropsychologist in Tucson. The previous spring we were told by his primary care physician he “probably” had Alzheimer’s disease.
“Will there be more tests, Bon? I don’t want to do it.” His shaky blue-veined hands are holding his face. These are the same hands that reached for mine so many times. We safely crossed roads together as I grew. We high-fived.
I know he’s scared. Lately everything in his life has been making him feel stupid and disconnected. He is right. He’s in for a frustrating day of tests. And they are going to be hard on him. But the results will also provide us with crucial information regarding the precise areas in which he is weak and strong cognitively. This information will guide our efforts to reach him as the disease takes his brain. It will begin in the cerebrum. Eventually he will forget to swallow as it invades the cerebellum. It is like the nightmares he used to field with me, except this time it’s real. I’m gripping the handrails of the chair. I’m swallowing hard against the sobs that keep rising in my throat. This is worse than when my babies were sick. They had a good prognosis. I was lucky. But not this time.
“The tests are going to help us, Pop. I’ll be with you every step of the way. It will be over soon and we’ll go for ice cream.”
My mind jumps back twenty-seven years. I am ten again. I have a wicked sore throat. Pop and I are in the pediatric waiting room. “I don’t want to be tested, Daddy. Will it hurt?”
“It might hurt, sweetheart, but only a little. I will be right here with you. It will be a swab in your throat for one second. It will feel scratchy and then we’ll go for ice cream.”
“Mr. Clayton, we’re ready for you.”
Suddenly, I am thirty-seven years old again. The tests begin. I stay with Pop the entire time.
After the tests are completed, we are waiting to hear the results from the neuropsychologist. Pop is exhausted. So am I.
The door is flung open. The doctor bursts into the room. He shakes both our hands. “Hi folks, I’m Doctor X.”
He sits down in front of his desk, his back to us, reading from a manila file folder. “There is no doubt this is dementia,” he says. “The data is consistent with Alzheimer’s disease. His judgment is terrible. Visual/spatial skills are poor as are fine motor skills.”
“What do you mean I’m demented?,” Pop says. “There is no evidence of that! What are your credentials? And what the hell do you mean by poor judgment? That’s your judgment.”
The doctor raises his eyebrows and turns to me. “When did you first notice your father’s symptoms?”
Pop snaps. “Why do you direct your questions about me to my daughter?”
“Because she is the only one here who knows anything about what is going on.”
I watch my father’s hands grip the arm rests of his chair, knuckles going white. One of us is going to smack this guy. I fight off the urge and say to the Dr., “Let’s not turn this into a competition.”
He steps back. I suggest we take a break. I help Pop to the car and schedule a phone consultation with the physician for later.
In the future I will hand every physician who sees my dad an index card before his visit. It will say: “My father has Alzheimer’s disease. He also has a Ph.D. in Biology. What remains of his identity is rooted in his intellect. Tell him his ideas are good and smart. Treat him with kindness and respect. You can tell me the real story in a coded way or on the phone another time.”
It worked. I never faced another doctor who humiliated my dad. And we did go for ice cream. Banana splits at Swenson’s both times.
Fifteen Bottles of Old Spice Body Wash
It is late winter, 2009. I call Pop. “Hi,” I say, “How are you doing?”
“Bon,” he says. “I’m glad you called. I need to go to the grocery store today and then we could have lunch. I thought you could drive this time.”
“Okay, that’s no problem. Have you made a list?”
“Yes. I need Cheerios, Orange Juice and some Old Spice Body Wash.”
“Sounds good, Pop. I’ll see you in about twenty minutes.”
When we come back to his townhouse and I open the kitchen cabinets, I discover a total of six boxes of unopened Cheerios stashed in different cupboards. I’m baffled, but say nothing. In the refrigerator there are three bottles of orange juice, two of which are unopened. Again, I say nothing.
I go into the bathroom and look under the sink. There is a line of bottles of Old Spice Body Wash. As I count them, a nervous flutter builds in my chest. Fifteen. I take a deep breath to steady myself. “Hey Dad,” I call out from the bathroom, an old memory of a video I saw about hoarding behavior in Alzheimer’s disease, creeps into the present. “Do you know you already have this stuff, Dad?”
“I know. I just don’t want to run out, that’s all.”
“But, Dad. There are fifteen bottles of Old Spice Body Wash in here. There is no way you’re going to run out.”
“What the hell do you care? It’s my stuff.”
This is what will lead me to make an appointment with his doctor.
One of my regrets is that I didn’t notice Dad’s hoarding until that day in 2009. He always came to my house when we visited because my kids were more comfortable there. I ought to have checked on him in his own environment. It would have meant a sooner diagnosis and earlier interventions.
You Have Some Blockage in Your Nasal Epithelia
It is summer 2011. Pop and I are having breakfast together at a café in Tucson. We are approached by our server, an energetic young man in khakis and a buttoned down blue shirt. His name tag says, Mark. “What can I get for you today, sir,” he asks, order pad in hand. Mark sneezes and excuses himself.
My dad orders a Santa Fe omelet.
Mark sneezes again.
“Perhaps you should go home, young man,” Pop says. “You sound like you have come down with a….” His brow furrows.
I know he is looking for a word.
Pop starts over. “You sound like you have a….” Again he pauses, says “hmm,” then chuckles. “You sound like you have some blockage in your nasal epithelia.”
Mark is clearly taken aback. “Thank you, sir. I mean wait…what does that mean?”
Pop smiles as if still lecturing in his university classroom. “Your nasal epithelia—the interior of your nose.”
“Oh, okay. Wow. You are a smart man. Are you a doctor?”
Dad laughs. “Ph.D. That’s the best kind. And make sure you wash your hands frequently, young man.”
After Mark takes my order and returns to the kitchen, Pop turns to me, the playful expression gone from his face. “There is nothing wrong with my brain, Bon.”
In the weeks, months and years to come, Pop will continue to rely heavily on the technical language of his profession when he cannot remember simple words like “cold.”
Appreciating his ability to do this will become one of the key ways in which I and other caregivers will be able to create respectful and harmonious interactions with him.
Scarlet Fever and a Clipper Ship
It is nearing Thanksgiving, 2012. Pop and I are sitting at the big maple table in my kitchen, art supplies and books on tall ships spread around us. I’ve traced the outline of a clipper.
Pop points to the headsails. “Those triangular ones are Jib sails, Bon. They should be fixed to the bowsprit. You need to move them over a little.”
I do as he instructs. “Okay, Pop. How does that look?”
He’s happy. Having a great time. “Good. Good. That’s much better.” He traces his finger along the hull. “I’d like to see the portholes put here in a straight line.” He moves his index finger up to the top of the Mizzen-mast. “This is a three-masted ship, Bon. We might want to mount some flags here.”
My happiness is mirroring his. “Okay, Dad. Sounds great.”
He continues to touch the drawing as if it were something alive—an old friend. “You need to get the lines in there. Let me show you how they should look.”
My dad’s hands are too shaky to draw now, but he obviously knows exactly where things belong.
In 1934, when he was ten years old, Pop had Scarlet Fever. His parents kept him home from school for several weeks. With nothing to do except read, he devoured his favorite book—a specialized dictionary that included detailed diagrams of ships. He once told me, it was his love of ships that drew him to serve in the Navy after Pearl Harbor was bombed.
I know his ability to guide the details of our drawing comes from this long-term memory.
Now, we have the completed ship in pencil. I am darkening the lines so Pop can see them clearly. He is eighty-seven and macular degeneration has diminished his eyesight.
I crush blue pastel with a mortar and pestle, draw in some waves and hand my father a paintbrush. He lights up. Together we hold the mortar and he paints the pastel color onto the ocean waves under the ship’s hull.
Two hours later he is still blissfully engaged.
If he makes a mistake I think he’ll notice later, I surreptitiously remove the pastel with a gum eraser.
As I hold up the finished painting, he grins at his accomplishment, puts the paintbrush in his mouth like a cigar and looks at me above the top of his glasses. “I feel like good old Michaelangelo, Bon.”
Pop named that ship the “USS Claytonia”. We framed the Claytonia and it hung next to his bed until the day he died. Now, it hangs next to mine.
I’ve Got to Get Down to the University and Give a Paper
It is October 2014. I receive a call from Pop’s night shift caregiver, Maria. This is the picture she paints for me about the previous evening:
Pop awakens after midnight. He attempts to get out of bed. He has had two hip fractures in the past year and can’t walk. He also can’t remember that he is unable to walk. As he struggles to get out of bed, his shifting weight sets off the bed alarm. Maria is there within a minute. He has not yet fallen. She sits down on the edge of his bed, steading him with her arm. “Hi, Dr Clayton. What’s happening?”
Pop grimaces as he tries to move a right hip that is not yet healed. “I need to get down to the University and give a paper.”
Maria places her hand on his shoulder. “Okay, sir. Your papers are right here on your desk. May I help you?”
“Yes. Thank God you are here,” he says, his relief palpable.
Maria opens the center drawer of his roll top desk and pulls out one of several academic papers he wrote years before. “No problem, sir.”
My brother and I had placed the file there a few months prior and talked with the staff, anticipating this might happen.
Maria hands it to him, sits down on the bed’s edge again and puts her arm around his shoulders. “This one is called, ‘The Skinny on Benzene.’ Clever title, Doctor. Would you like to talk about this?”
His shoulders tense. “No. I have to go. Right now. I can’t be late.”
“Then let’s make it happen,” she says. Maria buzzes her co-worker, Tim.
A moment later, Tim enters the room. “How can I help?”
Maria looks at him, an understanding passing between them. “We’re headed to the University to give a paper on Benzene.”
“Roger that,” Tim says, then heads over to assist Maria. They ready my Dad for the lift from the bed into the wheelchair. “Here we go, sir. On the count of three.”
Pop counts for them.
Once he’s seated in his wheelchair, Maria places the ‘Skinny on Benzene” in a scratched, leather briefcase with two straps fastened into brass buckles around the front. Pop bought this briefcase in the early seventies and used it throughout his University career. She sets it on his knees.
He encircles it with his arms, pulls it toward him and cradles it in his lap.
As Tim pushes the wheelchair into the empty common area, Pop, believing he is in a university lecture hall, calls out, “Where are my students? Where is everyone?”
“We’re here early, Dr. Clayton,” Maria says. “This is our chance to preview the paper. May I read it aloud?”
He nods over and over. “Yes. Yes. That would be wonderful.”
She pulls a stool in front of his wheelchair. “We need to take the paper out of your briefcase, sir.”
He pulls it closer to his chest, hugs it.
She gives him a moment, waits until he gradually releases his grip on the briefcase.
When he is ready, she carefully unclasps the two buckles and pulls the paper from inside, never removing the briefcase from his arms. Once she has the paper in hand, she signals to Tim, subtly lifts an imaginary glass to her lips, and begins to read.
“Recent decades have seen an increase in environmental levels of benzene…”
Tim, quietly, sets two glasses of water on the table beside them, then backs off but doesn’t leave the room.
By the time Maria reaches the third paragraph, my father yawns and says, “I’m tired now.”
Tim applauds, softly. “I learned so much from your paper, Professor.”
Maria picks up a glass of water and hands the other one to my father. “Let’s drink to that,” she says, clicking her cup against his. She makes a mental note to follow up with a urinalysis first thing in the morning.
He downs the water. “Ah yes,” he says. “Time for nighty-nooper. Let’s go.”
I tell Maria on the phone that she is a genius and ask her to thank Tim. I am so blessed my father’s care is in the hands of compassionate and innovative people like them. There isn’t enough money in the world to truly represent the value of caregivers like Tim and Maria, but we ought to be giving them a lot more pay than we do in our society if you ask me.
I’ll Sue You For This
It is 2014. I’m at the memory care community visiting Pop. He is sitting in a wheelchair next to his desk. Rebecca, his day-time caregiver, needs to remove his 1948 Class Ring because he has developed dermatitis underneath the ring and there is risk of infection. Pop has worn this ring every day for more than sixty years. And he does not want to give it up.
Rebecca holds his hand, slides the ring down to his second knuckle, exposing the skin damage. “We would never take your ring from you, sir. We just need to let your finger heal. You’ve got some skin damage here.”
Pop yanks his hand away. “That’s bullshit. Where did you receive your training as a dermatologist?”
“You’re absolutely right, sir. But I have spoken with a dermatologist…”
“I don’t care if you spoke to the Surgeon General of the United States. I’m keeping my damn ring.”
Rebecca nods. “I understand why you’re angry and you’re right. Your other hand looks good. What if we switch the ring?”
She reassures him she understands the ring belongs to him and this is only a temporary situation. In one quick gesture, she removes the ring.
Pop takes a swing at her. “I’ll sue you for this!”
I step in to support her.
Going down on one knee to meet his gaze, I extend my hand. Rebecca drops the ring into it and steps back.
I put my hand firmly on his knee and make eye contact. In order to validate his anger, I raise my voice. “Dad, there is no way in hell I will let anyone take this ring from you. Let’s take a deep breath together.”
We do. He begins to calm down.
Rebecca steps back in. “I agree with your daughter,” she says. “You have my word you’ll get your ring back.”
I stand up and put my arm around Rebecca, showing my father I support her in this action. “I know she will, Dad. She’s one of the best and I trust her.”
“I’ll trust her when she gives me my damn ring back.”
“I’ll make sure of it, Pop.”
For several days afterwards, he felt the absence of his ring, and this interaction, or some version of it, was reenacted. By the time the finger healed, he had forgotten the ring altogether. We decided not to put the ring back on his finger because we feared the skin irritation would only return, forcing my father and his caregivers to go through the whole ordeal again. Eventually, the ring no longer fit him and he kept it in a little dish next to his bed. After he passed, I took the ring home and put it on a chain to wear in remembrance of him.