Of the more than 6 million Americans living with Alzheimer's disease, almost two-thirds are women, according to the Alzheimer’s Association. To one degree or another, many of these women depend on family or friends for their care.
Statistics from the Centers for Disease Control and Prevention (CDC)show that every year, more than 16 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias.
On this Mother’s Day, many adult children will be spending time with their mothers who have the devastating condition and depend on their sons and daughters for many of their basic needs.
Alzheimer’s is an insidious illness because it gradually erases the person you knew and loved. The disease destroys brain cells, interfering with memory, thinking, and behavior. The people who have it can lose the ability to carry out everyday activities. They may do things that don’t make sense. They may wander off and forget where they are heading. They may fail to recognize family members, call them by other names, and forget what their relationship is to them. They may become confused about the location of home or the passage of time.
When dementia takes over, the parent and child often change roles, as the adult child becomes the caregiver for the one who once looked after them.
During the COVID-19 pandemic, caregiving responsibilities became even more challenging, and adult children have had to take extra measures to prevent exposing their parent with dementia to the deadly virus.
For Mother’s Day, here are two inspiring stories recognizing the caregiving of adult children and the mothers they love who are coping with Alzheimer’s.
Priscilla Jean-Louis Is Taking Care of 4 Generations at Once
Priscilla Jean-Louis, of Tallahassee, Florida, is among the one-quarter of dementia caregivers who are known as “sandwich generation” caregivers, meaning that they care not only for an aging parent, but also for children under age 18, according to the CDC.
In Jean-Louis’s case, the 46-year-old, who is a single mom, not only tends to her 78-year-old mother, Vera Johnson, but is also raising two daughters — Destiny, who is now 23 and out of the house, and Kaylin, who is 15. To make matters even more challenging, Jean-Louis is caring for 97-year-old Julie Powell — a longtime family friend whom Jean-Louis calls her grandmother — who also has Alzheimer’s disease.
As recently as 2016, Johnson was living on her own and often helped Jean-Louis out by picking up her daughter at school. But clues started mounting that something might be wrong with Johnson’s cognition: She was misplacing keys, eyeglasses, and purses. After Johnson had back surgery, things got noticeably worse. She would repeat herself more often, and then one day Destiny told Jean-Louis that she didn’t want grandma to pick her up from school anymore because she was pulling out in front of cars and almost getting hit.
As her mom’s condition deteriorated, Jean-Louis began picking her up after work and driving her to her house to spend nights and weekends together. By May 2017, they had decided to move in together.
A year after they started cohabiting, Jean-Louis received a call that Powell could no longer live alone, as her Alzheimer’s had worsened. Although Jean-Louis knew it would be challenging, she made the decision to move her grandmother in with the family as well, and from that point on, she was taking care of both women.
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What It’s Like to Live With a Parent Who Can No Longer Care for Herself
Johnson’s condition has deteriorated to the point where she is not able to bathe or groom herself independently. She is not capable of brushing her teeth or putting on her own clothes.
“She doesn't know a pair of pants from a shirt,” says Jean-Louis, who now does all these things for her. “Alzheimer’s is a very cruel and disrespectful disease.”
At times, Johnson puts used toilet paper into the wastebasket rather than in the toilet. Jean-Louis has to remind her to eat food with utensils rather than using her hands. Johnson can no longer cook, and all her food has to be prepared for her. She also went through a phase of wandering off if she was unattended.
“She used to have very long, beautiful gray hair,” says Jean-Louis. “We went through a period of about two weeks last year where she literally just sat down and pulled at her hair to the point where she tugged out the majority of it.”
While Johnson still knows Jean-Louis’s name, she sometimes thinks Priscilla is her mother rather than her daughter, and that her granddaughter Kaylin is her sister.
The disease frustrates Jean-Louis, because no matter how much she would love to change things, she can’t. There are moments when she just wants the mom that she knew growing up — to have a conversation with or just have a laugh together.
“In so many ways, you want things to go back to normal, but you realize that that’s not going to happen,” she says. “That is the part that becomes emotional for you — it pulls at your heartstrings, because you want things to be different.”
Daughter and a Paid Caregiver Provide Some Relief
Taking care of two elderly women with Alzheimer’s demands a lot of Jean-Louis’s time, and she often puts their care ahead of her own. She recently went through a separation and divorce, and she had to deal with all the upheaval that went along with that while keeping up with her care duties.
“Sometimes when you’re a caregiver, you tend to put yourself last when it comes to just about everything,” says Jean-Louis. “It’s a balance between being able to serve as a caregiver, and being able to take care of yourself.”
To help ease some of the pressure, Jean-Louis has hired someone to tend to her mother during the day so she can focus on her job with Disability Rights Florida — which, fortunately, she can do remotely from her home office.
She’s also gotten support from Kaylin, who helps with many caregiving tasks. Even just sitting with Johnson and Powell while Jean-Louis cooks is helpful.
When Jean-Louis got COVID-19 at the end of January, Kaylin took over as she isolated and recuperated over the course of 10 days.
“She literally ran the house while I had to quarantine,” says Jean-Louis. “Fixing dinner, washing clothes, going to the grocery store — she did it all, and she did an amazing job.”
Luckily, Jean-Louis had only mild, flu-like symptoms — she admits she actually enjoyed the first couple of days of quarantine because it gave her somewhat of a break — and she was soon back on her feet.
How Jean-Louis Finds Meaning in the Work She’s Doing
Jean-Louis finds that writing about her experiences with her mother and grandmother — from the funny moments to the challenges — on her website and on social media lightens the burden of caregiving as well.
“Sharing helps me deal with it all, and it helps to educate other people,” she says. “I can't tell you the amount of people who have reached out to me because they know about our journey.”
She also gets strength to keep going from her faith in God and her belief that this is her time to give back to those who have given her so much.
Thinking of her mother on this Mother’s Day, Jean-Louis appreciates what her mother has given her, including a family legacy of “being able to genuinely care for people with no underlying motive.” This quality has now been passed on to her daughters, who have both established nonprofit organizations to help others.
“I look at this period as an opportunity to serve my mom and my grandmother, who, when I was younger, they served me,” says Priscilla. “I literally tuck them into bed every night as if they're my children. It’s a role reversal — it’s love in reverse.”
Peter Karris’s Mother Has Early-Onset Alzheimer’s Disease
Peter Karris’s mother, Margaret Karris, was diagnosed with early-onset Alzheimer’s disease at age 62, and the progression of the disease has been swift. Five years after the diagnosis, she stopped walking, stopped being able to communicate, and was no longer able to feed herself.
Margaret had always been very active. She worked much of her life as a dietary aide at a nursing home in the United Presbyterian Residence in Woodbury, New York, on Long Island, and raised three children as a single mother. She was dedicated to her Grace Baptist Church, where she volunteered making gift baskets for Thanksgiving and lending a hand in the church’s food pantry.
But when Margaret was around 60, Karris and his brother and sister noticed small changes in their mother: She was not remembering things, and she was leaving the oven on, for example.
“She wasn't really at an age where you would suspect Alzheimer’s, so we didn’t know exactly what was wrong,” Karris says.
A Home Healthcare Aide Wasn’t Enough as Symptoms Worsened
As her symptoms got worse, doctors diagnosed her with early-onset Alzheimer’s. Initially, the Karris siblings got their mother an aide to help her around her apartment. After a minor car accident, they thought it best to take her car keys away. As her situation steadily worsened, Margaret needed more than just an aide at home, so she moved into the Parker Jewish Institute for Health Care and Rehabilitation in New Hyde Park, New York, which has a dedicated memory center.
Peter Karris had moved to San Diego for work and was seeing his mother a few times a year, but once she moved into the nursing home, he decided to move back to New York so he could see her more often and do what he could to help her.
Although the Parker Institute provides very good care, Karris says, he wanted to give her more attention than their staff could offer.
“It was just hard to see her there, just sitting in a wheelchair and staring at the wall,” he says. “Here and there, you would get a smile, because she knew you were there, but there’s really no communication.”
His employer figured out how he could work in the New York office, and once back on the East Coast, he started visiting his mother frequently.
Volunteering Feels Good and Helps Hardworking Staff
As Karris spent more time at the facility, he not only kept his mother company, but he also started providing support for other residents. Once, he helped to collect dolls so everyone in the unit had one.
“It’s therapeutic,” he says. “They think it’s like a baby.”
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He spent one day painting with his mother. He then gave the paintings to people in return for donations to the Alzheimer’s Association.
“I’ve been doing whatever I can to help keep it a positive atmosphere,” he says.
He appreciates the dedicated hard work of the full-time staff, and continues to volunteer. “We have workers in there that just work their butts off,” he says. “They’re understaffed, but they do the best they can with what they have. I am supportive of them and thankful for all they do. The certified nursing assistants are changing diapers for people my size. They’re doing it all day long. It’s a hard job, and it’s backbreaking.”
COVID-19 Outbreak Demands Even More In-Person Care
When the COVID-19 pandemic erupted in 2020, the Parker Jewish Institute was one of the hardest-hit nursing homes in the United States, with more than 100 deaths linked to the facility.
Margaret was one of the residents who got COVID-19, and she became extremely sick, to the point where she was put into hospice care, with the expectation that she would die. Indeed, her condition was thought to be so grave that a priest came in and read her last rites.
Dressed in full protective gear, Karris visited his mother every day as she fought the virus — and he took on a lot of the care duties, including changing his mom’s diapers.
“I was literally doing everything to try and keep her from dying,” he says. She wasn’t drinking, so he started using a syringe to put water into her mouth.
“After I was syringing water into her mouth, she started making sighs of relief,” he says. “Thankfully, my mom started drinking again and getting energy back. She made it through COVID, which was a miracle.”
Her roommate, and some of the other patients in her unit whom Karris had gotten to know, weren’t so lucky.
Mom Lights Up When She Meets Her First Granddaughter
Margaret continues to be very weak and is still in hospice care. But she has been able to see Karris get married and to meet her first granddaughter during an outdoor visit.
“I think she's super-excited to have a granddaughter, even though she can't really communicate it; we really just know,” he says. “She doesn't respond much to normal interaction, but when she saw the baby, she lit up and smiled.”
Right now Karris’s visits are limited to weekends. He would like to bring his daughter to see her grandmother, but there's a rule that visitors must be at least 18.
In spite of Karris’s upbeat attitude and can-do spirit, he does feel disappointed when his mother doesn’t always know who he is — and the masks for COVID protection make recognition even harder.
“She has no idea what COVID is, because she has Alzheimer’s, and now I don't know the last time she saw a normal face,” he says.
Karris’s Advice: Reach Out for Help, and Start Financial Planning Early
To others who are going through a similar situation, Karris recommends reaching out to the Alzheimer’s Association. “They can provide direction and help in so many different ways,” he says.
He encourages others to start planning soon after a parent has an initial diagnosis, so they can be prepared before the situation deteriorates and things get more difficult to arrange down the road.
Karris warns that the “financial planning that goes into trying to protect somebody who’s going to need long-term care is extensive.” He encourages families to explore resources from the Alzheimer’s Association that address these financial considerations.
“You don't want to lose your entire life savings when you need to get enhanced care at a nursing home or long-term care facility,” he says.
He adds that virtual support groups can provide emotional support and guidance.
“Knowing that there are other people going through the same thing, hearing their stories, and being able to share feelings and resources is definitely something that helps as far as taking care of yourself,” he says.
Karris also feels like he’s making a difference by participating in fundraisers for Alzheimer’s patients, such as the Longest Day, an annual day of money-raising events held on June 20 and sponsored by the Alzheimer’s Association. “It just makes me feel good to know that other people are going to support a cause that means so much to the family,” he says.
In addition, he advocates for government support for Alzheimer’s patients and research. Karris has traveled to the state capital a few times to speak with elected officials about these issues. “That’s very fulfilling, because it’s all for a good cause,” he says.
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Being Able to Show His Love Makes All the Effort Worth It
Although Karris has sacrificed countless hours to take care of his mother, he wouldn’t have it any other way.
“I guess I’ve always been kind of like a mama's boy,” says the 31-year-old. “She's done everything for us. She was always working extra hours, and she was just doing it for her kids.
“I've always had a strong connection with my mom, and there’s nothing more important to me than being able to show her that I love her, and being able to just spend some time with her when it's possible, and make sure that she knows that she's cared about.
“If I can just make her feel loved by spending an hour there on Saturday and Sunday and talking to her about what's going on in my life, and trying to help out when she gets sick, then there’s nothing more satisfying than doing that for me.”
For Karris, it’s the actions and time put in that really show somebody with Alzheimer's that you love them.
“This Mother's Day will be a little more special for our family, because she's still able to be here, and she has been able to see all of the great blessings in my life,” he says.