By LUCIE COUILLARD
Laughter filled the homey kitchen as Anne Mary Johnston rocked back, her smile reaching ear-to-ear crinkling her eyes closed behind wire framed glasses. Kim McGinnis smiled at her mom and shook her head, then continued to divide her mother’s medication into the blue plastic pill organizers.
The two were reflecting on Johnston’s childhood and her adventures in a meadow. Pictures were on the table next to the medication. Johnston dove deep into her memory— talking about the shenanigans she got into as a child and how she quit smoking cigarettes.
Pictures of family members lined the wall of the kitchen and living room, next to a calendar that said July even though it was March, and a brown Christmas wreath.
Johnston and McGinnis flipped through an album, giggling at certain photos and mourning over others of friends who have died.
“Memories are pictures and what they evoke for me,” McGinnis said.
“Human beings weigh their world based on memory,” said Claire Flaherty, an associate professor of neurology at Penn State Hersey Medical Center.
Each memory is tagged and the recall is based on emotional responses. If the person is interested, the emotional response helps him or her remember.
If someone feels great joy while listening to a song, they will remember that song because there is an emotion that is paired with it. They will then seek similar music.
This is how people gravitate towards certain interests. Realizing they like something, they will seek it out and this drive is part of memory, she said.
When things are neutral, that emotional response is absent and the memory is vague. When people lose emotional responses to things, they also lose memory, she said.
Johnston, who has Alzheimer’s, tells the story again and again about how her late husband bought Johnston a dog even though he did not like dogs. The dog, Millie, loved her husband, Johnston said, and while he was dying, Millie refused to leave her husband’s side.
Memory is connected to reflection, Flaherty said. Human beings reflect on the past to have a sense of self. This enables people to learn from their mistakes and make different decisions in the future, she said. When people have memory loss, they have less material to reflect on.
“They can reflect on long term memory, but not [the] present,” Flaherty said, “because they are having trouble holding onto the present.”
After his death, Johnston said Millie went into deep mourning. Johnston brought Millie to the vet to find out what was wrong, and the vet said Millie missed Mr. Johnston and that it would take time for the dog to recover.
Johnston, whose short-term memory is fading, tells this tale repeatedly while Millie sits on her lap, both look lovingly at each other.
Reflecting back is part of maturing, Flaherty said. It is part of the process of acceptance of the past so people can also accept the present, she said. It is healthy to look back on earlier years and accept those things that are not able to change.
“To recognize what we don’t have control of,” she said.
Into the silence
Alzheimer’s is a type of dementia that causes issues with thinking, memory and behavior, according to the Alzheimer’s Association. The symptoms, which develop slowly and worsen over time, develop to a point that can interfere with daily tasks.
In the early stages of Alzheimer’s, a person experiences mild memory loss, but by the late-stage, individuals lose their ability to respond to the environment, according to the association.
Alzheimer’s leaves the person with memory loss dependent on caretakers, who also have to face an unsure financial future while watching their loved ones sink deeper into the disease.
“When you think about it, you lost half your life when you lose your memory,” said Barney McCormick, a former Penn State professor.
McCormick lives at The Village at Penn State and cares for his wife, Emily McCormick, who has dementia.
“It’s really sad and a shame,” McCormick said. “We did a lot of traveling together. We’ve been a lot of places. But the memories of those are gone pretty much. Although in the long term she comes up with things that surprise me. Memory is kind of a funny thing.”
The two have been married for 68 years and are both 88 years old. They moved into the Village around a year and half ago when Emily McCormick broke her hip. It was then that her memory loss began to show, although Emily McCormick does not realize she has this loss, Barney McCormick said.
At the time, the doctors gave her medication, but it just made her sick and she showed no improvement, Barney McCormick said. There is no cure for dementia and Alzheimer’s.
Like the McCormicks, McGinnis and her mother, Johnston, have been battling through the discovery of Johnston’s memory loss. Johnston was diagnosed with Alzheimer’s August 2014, McGinnis said.
Johnston, who is 72 years old, began showing signs of the disease around the time Johnston’s husband died in 2010, four years prior to her diagnoses, McGinnis said, but it was overlooked as forgetfulness.
After her stepfather died, her mother became deeply depressed and withdrawn, McGinnis said. But at the time, McGinnis did not recognize that her mother had Alzheimer’s because her mother was so independent.
McGinnis became confused by her mother’s actions, noticing her mother becoming more dependent on McGinnis and having trouble processing what was going on. She also noticed her mother losing interest in her hobbies such as gardening and repeatedly eating the same frozen meal.
In November 2014, around Thanksgiving, McGinnis found her mother in her house with the windows and doors open, part of her Christmas tree thrown in the driveway and her collectable bears broken on the floor.
“All these things that were so special to her were broken and laying on the floor,” McGinnis said.
After spending time with doctors, Johnston was put on proper medication and McGinnis set up caregivers, realizing that Johnston needed to be with people to take care of her and watch over her.
And since then, Johnston has adjusted to a daily routine.
McGinnis hired two caregivers, one for during the day and one who spends the nights. They help Johnston clean and they cook for her. McGinnis visits almost daily to help Johnston pay her bills and sort out the medication.
She doesn’t know how long they can afford to have stay-at-home caregivers. She predicts that they can afford two caregivers for another year, but needs to go to a financial planner and apply for assistance. After that, she said, she might start living at her mother’s but keep a caregiver during the day so she can continue working and maintain her normal life.
McGinnis said it is important that during this she remembers to know her own limits and care for herself. Also to reach out to people when she needs help.
McGinnis said she fears her mother becoming someone who cannot recognize anyone and just sits, and all her personal needs taken care of by others.
With this diagnoses, McGinnis said she has lost part of her mother but gained another part back. There was a period of time when no one knew what was going on with Johnston. McGinnis thought her mother had changed.
But the diagnoses explained it.
During her hospitalization, Johnston told McGinnis she doesn’t and never loved her, McGinnis said.
“At one point the nurse told me, ‘you know it’s not her.’ I know, but it is still hard to hear.”
McGinnis said she does get annoyed with her mother, the conversations are repeated and Johnston is extremely dependent on those who care for her.
“It is frustrating and you feel guilty. Especially the days you don’t have patience,” McGinnis said.
But there is happiness in this family. Johnston’s home is filled with pictures of her family that she is takes out to look at and show guests. She attends her grandson’s track meets and sees her sister weekly. Family members visits and helps Johnston.
And the mother-daughter pair is constantly laughing, sometimes at the memory loss. The subject is not taboo in their house — it’s reality, McGinnis said.
“I know I have a memory problem,” Johnston said. “There is a lot I can’t remember. I can remember things from a long time ago, but I can’t remember today. It’s hard. It’s really hard.”
McGinnis said they can’t change what has happened and she knows if she isn’t laughing about it, it will impact her negatively and emotionally.
“We all want to make logic and figure out why,” McGinnis said. “There is no ‘why’ to why these things happen.”
With a warm world
Dressed all in black, Karen Urbanski flipped through a photo album filled with fading photos of people with serious faces.
“Look at this, isn’t it great. World War One, World War One,” said the owner of Aardvark Kafe, on West College Avenue in State College, while smiling and turning the pages. “Isn’t he a freak, a mountain man,” she said while having a kind laugh at a man with an intense beard.
Urbanski has been antiquing for about a year and throughout this time she saved the photos she has acquired. Instead of stacking them in a pile she decided to write a book about each photo, giving the nameless people a story. So far she has a couple hundred photos and has been asking people who come into her restaurant to share a story about their family members. Urbanski is pairing the true stories of their families with the photos she’s collected.
“This couple,” she said while holding a tarnished photo of a couple sitting comfortably apart, “Who are they? They have no name, no story. But they have a story [but I don’t know it] and it gets me. It really gets me. It drives me nuts.”
Sunlight streamed in from the window, highlighting her salt and pepper hair. With a beaded necklace circling her throat, Urbanski gazed through her glasses that were perched on the tip of her nose at the worn photos over the circular wooden table.
Urbanski knows nothing about the people in the photos. But history is more than just cold hard facts, she said. So is memory.
Urbanski was partly inspired to do this project by her father. He died two weeks prior, and use to tell her stories. She has photos of him from when he was a little boy and when he was in the Navy.
“I don’t want my dad’s pictures to fade. I don’t want him to fade,” she said while showing photos.
She said she enjoys asking people to tell their stories and to relive moments. They will frown then smile, she said. Hopefully, she said, they would be inspired to ask their grandparents about their own stories.
She said she wishes she had her grandparents back to listen to for a day. “I’ve got some really cool blood. And if you think about this DNA that is in me, it’s the same that was in these ancestors of mine,” she said. “They were tough people.”
Urbanski continued to flip through the album, staring at the photos that showed what Centre Pennsylvania looked like before Hurricane Agnes, a hurricane that hit in 1972 and caused devastating floods that ruined houses and businesses.
She reflected about a time she asked a woman for a story and the woman responded she had no story and her family had no story. Urbanski pushed her a little more and discovered her family all went their separate ways and that her father was an alcoholic that would beat the family. She said her childhood was awful.
“It’s a sad story, it may be different than what other people have. But you have a story,” Urbanski said she told the woman.
She told another story about how her grandmother’s first husband died in a car accident on Route 99 and anytime she drives by she remembers.
“Every memory is important,” she said. “They sneak up at appropriate times. I think memory is a gift. You can just close your eyes and be there.”
About The Contributor
Lucie Couillard is a graduate of Pennsylvania State University, University Park Campus.
She majored in Print Journalism with a minor in Anthropology and studied photojournalism.
Her focus is on long form journalism and strives to tell overlooked stories.
To see more about the author