Tangled Together
A Family Navigating Alzheimer’s in a Global Pandemic
As COVID-19 arrived in the United States, Stephanie Georges made the decision to move her parents, Mary and Jerry, out of their New York City apartment and into her home in rural Connecticut after her mother was diagnosed with Alzheimer’s in late 2019. Having no previous experience as a caregiver, Stephanie was forced to quickly adjust to both the pandemic and her parent’s growing needs.
Of the top ten causes of death globally, Alzheimer’s is the only one without a cure. Around a third of the 450,000 Covid deaths in the U.S. have been at long-term care facilities like nursing homes, where roughly half of the residents are living with Alzheimer’s or a form of dementia and 70% of caregivers surveyed by UsAgainstAlzheimer’s in Fall 2020 reported a decline in their loved ones’ memory or behaviors. The the number of people living with Alzheimer’s or a form of dementia is also expected to triple by 2050 to 152 million. The pandemic has created an increased need for Alzheimer’s care and attention and has also shown the increased strain on caregivers who are also struggling to find support and care of their own in the unprecedented circumstance.
Stephanie, a single mother and business executive, has now become a primary caretaker while Mary and Jerry have struggled to navigate life away from the familiarity of their home in New York. Mary’s shifting relationship to the world through her Alzheimer’s diagnosis and Jerry’s attempts to take care of her while also worrying and fearing for his own health has become increasingly difficult through the lens of Covid-19.
Mary has always gravitated towards the kitchen.
She finds comfort and familiarity in making the foods that remind her of her village in Greece or the home she dreamed of having in France.
Since her Alzheimer’s diagnosis in 2019, the kitchen has remained focal point where she still feels drawn to stir her favorite lemon soup.
When not reminiscing about his days in the Navy or running his pharmacy in Brooklyn, Jerry dozes off to the ever present purr of CNBC or Turner Classic Movie Channel .
Stephanie balances her life as a single mother of three with her job as a Chief Marketing Officer for an aerospace and defense technology company. In March 2020, as COVID-19 arrived in the United States, she decided to move her parents into her home, becoming the main caregiver for her mother.
Her first meeting of the day begins at 8:30am.
During the day, as Stephanie works from home, Jerry coaxes Mary to take their climb up and down the driveway.
Jerry’s heart condition makes the walk a slow one, but he always makes sure Mary gets her daily venture outside.
Mary is in Middle-Stage Alzheimer's, still able to dress and wash herself, with some help. Mary rarely leaves Jerry’s side, getting confused and disoriented when he is not in sight.
Prior to the pandemic, Stephanie commuted weekly between Boston and Connecticut, visiting her parents twice a month in New York City. Working from home has meant a stable environment and more time to spend her children.
On her lunch breaks, Stephanie makes her rounds through the house, checking in to see where she is needed.
“When I got older my parents and I had a really rocky relationship because they, especially my mom, did not approve of who I was married to and she really distanced herself. So we really, we lost touch. We did not communicate for several years.
Since she came to live with me, it's almost like we've tapped into some mutual respect and appreciation for each other and I don't ever remember being as close to my mom as I am now.”
On weekends, Stephanie takes more time with her mother and engages and supervises her in activities Mary feels familiar with.
Mary sewed up a hole in Jerry’s pants but after sewing the pocket closed thinking it was the hole, Stephanie helps her redo the stitching.
“They like ginger ale and cranberry juice and English muffins and I kind of stock the pantry with their things that they like. I’m really just trying to help them feel comfortable and give them a sense of autonomy and access when it has been hard for them to find that.
Burger night occurs weekly, giving Jerry a chance to grill his favorite meal while Mary watches closely to make sure she doesn’t lose track of him while he is outside.
Two-thirds of people diagnosed with Alzheimer’s are women and two-thirds of caregivers are also women. One-third of caregivers are daughters.
The demand on caregivers time has grown during the pandemic. Around 16 million Americans provide unpaid care for people with Alzheimer’s or other dementias and the amount of time spent on caregiving has, on average, increased 8 hours/week.
Dinner is long anticipated. At the beginning of the pandemic Stephanie wanted on make meals a focal point.
At 7:00, the chaos subsides as everyone descends from their corners of the house and rarely does a meal end before the two-hour mark.
Every five weeks, Mary and Jerry return to their New York City apartment to attend doctors appointments before returning to Connecticut.
They have lived in the unchanging apartment since the 1990’s.
“I could see my dad was struggling. He was really trying to take care of her, the apartment wasn't as clean. I got them somebody to clean the place. And then I had them over to dinner at my apartment in New York. And then I could see there, it was easier for me to see on my territory, how they were interacting and where her deficiencies were. And it became clear that my dad couldn't do it by himself. And there was, you could see his frustration with her. And I began to worry that if she got sick with COVID, they got either of them, it was untenable.”
Mary and Jerry have lived in their unchanging apartment since the 1990’s.
Jerry continues to fill in his calendar on his desk when he returns.
After their first date in Brooklyn at a Greek Society seasonal dance, Mary and Jerry became inseparable. They will celebrate their 59th wedding anniversary in the September.
Mary never let Jerry spend time in the kitchen. Since her diagnosis, Jerry has begun to learn how to make Mary’s favorite recipes and while in the kitchen,
refers to himself “Chef #2”.
When her mother moved in, Stephanie bought her a tiara to help bring more play into her day. Mary now gets crowned at least once a day.
Stephanie waits for her parents to fill their nightly glasses of water and make their way to bed, anticipating her tasks after their door closes for the night.
After putting her parents to bed, Stephanie prepares for work the next day while cleaning the kitchen, prepping the coffee machine, and trying to check as many items off of her ever-present to do list.
“I think she kind of understands what's required during COVID, but maybe she is really just following what we say. I don't think she's even processed that she's spending time up here in Connecticut is because of COVID. I don’t know, I don't really believe she understands what’s going on. Not for any sustained period of time.
She got her vaccines, but I don't even know that she knows why, but nobody asks her either.
Nobody asks her. Or maybe we are afraid to ask or afraid to know that she doesn't know.”
In early April, Mary and Jerry both received their COVID-19 vaccines.
“Very early on he was very, very insistent: I can do this. I will let you know when I can't anymore, but I've got this, I can do this. When COVID hit, he got really nervous. I think he was afraid of getting sick. He was afraid that he wouldn't be able to take care of himself and take care of her. He was really scared that he couldn't do it alone.”
Stephanie soothes Mary as she waits for her second COVID vaccine shot.
The pandemic has created more confusion and isolation for those with Alzheimer’s.
On the few trips outside of the house, Mary constantly asks what people are wearing on their faces and gets overwhelmed when she is made to a mask one too.
Both as an anxious habit and a way to shift furniture to meet her mothers needs, Stephanie’s house is in an ever-changing state.
Although the kitchen has been one of Mary’s safe and familiar spaces throughout the pandemic, she becomes overwhelmed when others attempt to take over or she when she suddenly gets disoriented.
The few days when Mary and Jerry are in New York City, Stephanie catches up on work, sleep, and prepping the house for their return.
In the Georges family, Mary’s birthday has always been one of family lore. At fourteen she emmigrated from Greece to America. Upon her arrival at Ellis Island she was asked her birthday. In her village, birthdays weren’t celebrated as they are in America so she hastily blurted a date: September 27.
Later a record was discovered with April 14 as her real birthday.
Every year, she denies her birthday is on either day but both are celebrated…just in case.
Mary and Jerry wait patiently for the evening to begin.