If forgetfulness is a nick in the fabric of everyday life, Delores mends it with systems of reminders—a stitch for every challenge she faces. She acknowledges the limitations of her memory and is invested in completing those simple tasks that carry great importance to healthy living. Keeping things in plain sight is a helpful strategy for remembering everything from taking her daily cholesterol medication, staying hydrated, to bringing groceries home from the car.
Maintaining connections to the wider world is equally important to Delores. Lines of communication hinge upon the functioning of her mobile and home phones, so remembering to routinely charge those devices requires the development of routines aided by sticky note reminders. “If I [charge the phone] every day,” she says, "then that will help me to not forget until it gets down to the very lowest level."
A mail sorting system allows Delores to keep better track of her bills and, perhaps just as importantly, maintain participation in social and professional organizations such as the Philadelphia Alliance of Black Social Workers, of which she is a member, that bring continuity to a life that can feel fragmented by MCI.
For an expert collector of masks from around the world, each an exquisite artifact designed to conceal and obscure, Bob is surprisingly candid, particularly when it comes to living with dementia.
An artist-turned-adman and the oldest of four children, he was the caretaker of his disabled sister in her first few years. Later in life she suffered and died from early onset Alzheimer’s disease.
Bob has no delusions about what lies ahead. “There is steady deterioration,” he says. “I know where this goes.”
But Bob's diagnosis has not prevented him from pursuing his passions. Having exhibited his collection of masks at the Lancaster Museum of Art and published a book on the subject in 2015, he is now reconceptualizing his website, a resource and platform for collectors and enthusiasts of masks.
He has embraced technology, such as voice-activated virtual assistants such as Siri, for its potential to aid his memory and improve daily life, but learning to use new tools has proven to be challenging. Reflecting on the untapped benefits of recent technological advances, Bob had a thought: “Wouldn't it be wonderful if we had some organization, organizations, that would be interested in helping people with MCI and other forms of brain deterioration learn to use these devices in a way that really is a big help to them?"
Just as Bob embraces the new, so too does he continue to experience the joy of lifelong hobbies. He continues to take great pleasure in cycling, though he understands it is something he will have to give up eventually as his condition worsens. But art making, particularly drawing, seems to be one of those things that is unaffected by MCI.
“I think I’m at a point in my life where doing something well with ease is a great thing for my ego,” he says about drawing. “And it can be enjoyable.”
Doris is no stranger to loss: the loss of her first son in infancy, her second son to incarceration, her grandmother and many aunts and uncles to Alzheimer’s disease, and now, her own memory. But having received her MCI diagnosis, “I was more relieved than scared, because I suspected it,” she says. “Matter of fact, I think it helps a lot… because I’m aware of it now. I monitor myself.”
Doris surrounds herself with a caring network of friends, who support each other through companionship and shared spirituality. A member of the Gospel Temple Baptist Church since the 1970s, she has forged close friendships with other members of the congregation, who support each other with both the mundane errands of everyday living and through significant personal losses, such as the death of a loved one. They check in on each other daily, go grocery shopping, and pray together. Delores says of a close friend, "She's been a big help to me in my life and adjusting to whatever comes along, no matter what goes on, I can call her anytime, day or night.”
An accountant for a funeral home, Doris enjoys the challenge of a good crossword puzzle and conversations with her neighbor’s inquisitive seven-year-old son. “He's good therapy for me. He drives me crazy asking all these questions, but I answer them, because he doesn't know, but it's helping me and my memory.”
Although the diagnosis of MCI has been helpful to Doris, she is aware of how such a label affects how she is perceived by others. “I don't think that the whole world need to know. If the time's come that they need to know, then I share it, but right now, it's something that I have to deal with first.”
Joanne’s mind is one that works best when stimulated. “I’m a multi-tasker, all my life.” she says. When she is not reading or playing brain exercise games on her computer, she is taking care of her four pets, preparing meals for family gatherings, or attending physical therapy and doctor’s appointments.
Born and raised in Philadelphia, she is the second-oldest of six children. After losing her only son, an Air Force veteran, she singlehandedly raised her four young grandchildren until they reached adulthood. The nurturing instinct in Joanne has found a new group of beneficiaries in her pets—two dogs and two cats that require much attention and care.
"This little Yorkie of mine has cataracts… and I have to put medicine in her eyes,” she says. “I don't have to do it daily, but pretty much weekly and, when I forget, which I do at times, her eyes are so crusty. We work so hard to try to clean it up.”
The demands of taking care of her pets can be taxing, particularly when Joanne maintains such a busy schedule. But she recognizes and values highly the benefits of an active and healthy lifestyle, and of an engaged mind.
“I come out of a family of readers,” she says. “When [my siblings and I] were younger… at one given time, all of us could be reading.”
Nowadays, Joanne reads the newspaper regularly and sometimes rereads certain sections to help the information sink in.
Reflecting upon her diagnosis of MCI, Joanne says, " I think it's a normal process of aging. Maybe it isn't, but I feel it is because I saw my mom go through it, my aunt, my grandmother… Being diagnosed, I know I'm not that bad because… I know what I'm doing and I can still drive. I can still do everything.”
Thomas, a pediatric anesthesiologist from Ottawa who spent most of his career caring for patients at the Children’s Hospital of Philadelphia, is keenly aware of the unique perspective his medical training provides him when it comes to living with his cognitive condition. “What’s Alzheimer’s? I know exactly what it looks like in the brain. If you weren’t a physician or a nurse… I don’t think you could tolerate it like I do. I think you couldn’t believe what’s happening."
For Thomas, social engagement and spiritual connectedness are vital. Regular church visits and frequent prayers bring a sense of peace and safety. “I believe in prayer,” he says. “When there's something that's not going just right, you pray and the Lord answers me every time.” Thomas relishes the companionship of his wife and, more recently, of their dog Charlotte, whom he walks three times a day and describes as “our best friend.” Visiting the neighborhood Starbucks has become part of the family’s daily routine; as for their favorite treats, a salted caramel and a cherry oat bar hit the spot.
Thomas attends a weekly MCI support group at the Penn Memory Center, where he has connected with other patients to share their experiences. "Sometimes you hear solutions to things that you haven't thought of that Joe Blow thought about it,” he says. "It's good to know that other people are battling the same problem.”
On a typical day, Susan’s life revolves around doing things she enjoys with the people she loves most—her family. Each week, she would drive from her home on the shore to visit her children and babysit her grandkids. “We go for walks. We’ll go out in the backyard. We have a swing set and we’ll swing or we’ll just toss the ball.” What could make days like this even better? Ice cream. “I love ice cream. It’s just a relaxing thing,” Susan says. “When I eat it… I don’t worry about anything. I’m just eating ice cream.”
Getting the whole family together—Susan and her husband have five children—can be difficult, but for their 30th anniversary, everyone gathered to celebrate the special occasion on a cruise vacation. Reflecting upon how her memory impairment has affected her relationship with her family, Susan admitted that there are moments of frustration, but overall, “I think it’s made it stronger,” she says.
But that is not to say MCI has not had a profound impact on Susan’s life. Her husband noted that she has given up many of her old hobbies and activities, such as reading, cooking, baking, and bookkeeping. The challenges of memory loss and the uncertainty of the future weigh down on Susan, who saw her plight in a leafless tree. “I could see it from right out the window and I said that’s how I feel sometimes… It looks like it’s dying.” Then, “I saw the flowering tree and I said I wish I could just come out of this and be the same as I was.”
With her husband’s support and encouragement, she is committed to changing her life for the better. Reminded of her love for books, she is determined try to begin reading again. She hopes to overcome her anxieties and socialize more. She wants to motivate herself to exercise more, and maybe finally sign up for that yoga class. "Life's about enjoying yourself, enjoying your family, and we have opportunities to do that.”
Food may be a means of sustenance for some, but it is a source of joy for Donna. Much of her life evolves around the planning and preparation of food, both professionally and personally. She worked at Whole Foods for three years. “I was a demo person,” she says. “I did meatless Mondays, I had my own recipes and I was happy.”
Now retired, Donna scours the web for new recipes to try and improve with her own customizations. Her most recent discovery: kabocha squash soup. “I found [the recipe] on the computer. I kind of like to put my own spin on it… to me everything tastes better roasted. I roasted the squash first… I added a little coconut milk and it was really, really good.”
Donna's passion for cooking can also be a source of frustrations at times. Having recently been diagnosed with irritable bowel syndrome, she now has to be more careful about her diet and keep better track of what she eats, which can be difficult. “I’m trying to be diligent about what I eat, what I don’t eat, what I can have and what I can’t have,” she says. “It gets to be challenging because somehow I’m like, ‘What did I eat?’… I find that I have to go back to the book, because I can’t always remember what I can have all right.”
Donna is focusing on developing a better system for organizing her recipes in order to accommodate her MCI. Still adjusting to life with MCI, she says, “It’s one thing to know you have something, and it’s another thing to accept that.”
In Christopher’s home, there hangs a framed letter on official White House stationery. It is a letter dated December 21, 1963 from Vice President Herbert Humphrey, expressing his gratitude to Christopher for his dedication and service under the Kennedy Administration. Today, it serves as a reminder to Christopher of his professional achievements throughout his decorated career in international relations and foreign affairs.
Christopher is a man of the world. He surrounds himself with mementos of his travels and, together with his wife, has charted their globetrotting adventures on the world map that now adorns their living room. The map, Christopher says, is a way for him and his wife to remember “something that is a major part of both of us."
Christopher continues to engage with the world by staying informed on current events through newspapers and TV news broadcasts. Reading, in particular, has become an important way for Christopher to cope with his MCI. "I would say over the last couple of years my memory has slowly been fading,” he says, "So I read a lot. I read the New York Times every day, in depth, I don’t just thumb through it."
His exploration of the world also extends to his own neighborhood, Rittenhouse Square. An avid walker, Christopher firmly believes that physical and mental activity are deeply entwined. “I'm interested in the world, so I’m interested in memory, and the Penn Memory Center."
Michele’s life has always been one of routine. On a typical day, she would wake up before 6am, have coffee and enjoy the sunshine and fresh air in the kitchen, leave for work at 7:30am, and arrive at her office by 8am. Michele is a hospital social worker, handling “large case loads” for an underserved community of uninsured patients, homeless seniors, drug addicts, and psychiatric patients. “You hit the hospital and it’s stressful,” she says. “The population that I serve, it’s very needy.”
Outside of her demanding professional life, Michele would visit her mother, who suffers from dementia, on Mondays and Wednesdays, go to church with her husband and relative on Saturdays, and set aside Sundays for relaxation and cooking. “I really try not to do anything on Sundays. I like that to be my peaceful day,” she says. “I like to cook. I love to be in a kitchen.”
However, with increasing signs of cognitive deterioration, Michele is prepared to transition to a less stressful lifestyle. Making plans for herself and her husband Alan has been a complicated process. “Do we downsize and go into a condominium? Do we downsize and go into a retirement community where we can get the services?” she says. “That's why I said we're at this crossroad… That's the biggest challenge for me, I must say.”
Whatever their decision, Michele is content with her life. “[Alan and I] had a good life together, and a respectful life. We like each other and we are respectful,” she reflects. “We have a respectful household. We've certainly raised our children in that way… It's a peaceful house. It's a nice home.”
Eight years ago, Jean left the suburbs of Philadelphia, where she had grown up and lived for most of her life, and moved to Center City, marking the beginning of her love affair with this vibrant city. “I love the view, and I look out the window a lot,” she says, “There’s always something going on."
She is always busy, she says. Starting with coffee each morning, Jean would plan her entire day. “I need my memory, and it helps me figure out. I'll sit down with my cup of coffee and figure out what I'm going to do that day, and that's part of remembering, to me.”
Although Jean admits that she has become less social since symptoms of cognitive impairment began to develop, she is determined to reengage with her wide network of friends. She has never shied away from her closest friends, however, who support each other through life’s many ups and downs. Jean says of one friend of 26 years, “She just lost her husband. My job is to keep her happy, so we go out a lot.”
In fact, Jean's active social life could easily rival that of any millennial. Recalling a girlfriend’s visit to Philly, she recounts, “We hopped [in] a cab ... Uber, actually. We went back to my place and regrouped and then went out to The Prime Rib… We actually closed the place, because I know the bartenders there, and I know a lot of people that hang at that bar. We had a really fun time.”
When Jean is not out on the town with her girlfriends, she can be found walking around the city, at the gym, reading the newspaper, listening to jazz, or in the kitchen preparing meals for family and friends. All of these things, she does in spite of her fear of what may happen if her memory continues to deteriorate. “Even though I watched my Mom get a little forgetful and so on, I never thought it would be me,” she says. “I don’t want that to happen to me. I’m trying to work on it.”
Few hobbies rely more heavily on memory than acting, so when Gerson began to experience increasing difficulty with memorizing lines for his community theater productions, he had to give up this beloved activity. But that has not stopped him from finding ways to continue his engagement with the dramatic arts. Now, he serves as a prompter during rehearsals for multiple theaters and takes a play reading course at Temple University’s Osher Lifelong Learning Institute, where he is also enrolled in a chair yoga class.
A psychology researcher who specialized in driver behavior, Gerson firmly believes in the importance of participating in research studies. “It has always been my feeling that anything I can do to advance knowledge, I would be happy to do,” he says. Aside from being a lifelong learner, Gerson enjoys the simple pleasures of everyday routines with his wife of 56 years. Each day at 4 p.m., the couple sits down for wine and cheese in their living room, a tradition of many years. “It’s a relaxing time; something that we look forward to,” says his wife, Estelle. “It’s very much a part of our day.”
Gerson’s reliance on his wife has increased as his short-term memory became increasingly affected by his MCI. “What's available to me for my memory is Estelle,” he says. “She accompanies me wherever I go, and handles the details more so than [I] can ever do, and I'm really dependent upon her to do that.” Adjusting to the role of caretaker has been a source of stress for Estelle, who is now responsible for everything from paying bills to organizing medication. “When she reminds me of something that I don't want to be reminded of, and I think I should know myself, it's difficult for me,” Gerson says, “and it's difficult for her.”
Living with MCI can be fraught with frustrations. Learning to use new technology, keeping track of medications, or even driving a car can feel challenging in unprecedented ways. But Carl does not let these difficulties define him. Early in life, he left a burgeoning career in banking to become a juvenile probation officer. Though driven by a desire make a difference, his motivations were far from grandiose. “If you can help one other person,” he says, “that’s pretty good.”
Today, Carl continues to find ways to give back by participating in medical research studies, which has provided him with a sense of purpose and community. Getting involved in studies ranging from Parkinson’s disease to sleep disorders has, in his wife’s words, “done more for him than the medication that he takes… because it gives him hope for the future,” even if there are no direct benefits to Carl himself.
In addition to his interests in medical research, Carl is an avid appreciator of art and music. Over the years, he has developed a particular fondness for Asian art. “There is a certain peace, serenity, and calmness that exists in Asian art that doesn’t exist in large parts of Western art,” he says. “I look towards art for that kind of pleasure.” Music can be similarly therapeutic for Carl, who likes to use Pandora Radio for hard-to-find tracks. Unlike his focused taste in art, however, his enjoyment of music spans many genres, including everything from Jefferson Airplane, Phillip Glass, to Olatunji Drums of Passion.
Citing the company of his family and loved ones as “the best medicine out there,” Carl reflects, “As life goes on the goal remains the same, it’s to stay alive, but the players change constantly… If you can go through life and constantly meet new friends and have new relationships and hopefully they’re positive ones, so much the better.”