Alzheimer’s caregivers share stories of stress, heartache
This is the fourth and last in a series of articles on the impact of Alzheimer’s disease on the Black community in Los Angeles produced as a project for the USC Annenberg Center for Health Journalism California Fellowship.
Other stories include:
This is the fourth and last in a series of articles on the impact of Alzheimer’s disease on the Black community in Los Angeles.
LOS ANGELES — It’s called the long goodbye, the prolonged period between diagnosis and death from Alzheimer’s disease.
For caregivers, it’s a daily struggle as they watch loved ones with dementia essentially become shells of themselves.
“The person you knew before is no longer there,” said Dr. Jarrod Carrol, who works with the Southern California Permanente Medical Group at Kaiser Permanente West Los Angeles Medical Center. “They are a different person in a different world.”
Greg King is one of those caregivers. For many years, life was good. He was traveling, enjoying a robust social life and ecstatic that his food truck business of nine years, Postcards Central American Soul Food (soul food with Central American influences) was gaining national recognition.
His world changed dramatically five years ago when his parents Adalene, now 79, and Willie, 81, were diagnosed with Alzheimer’s disease, beginning a new journey for King.
His mother was the first to show signs, followed several years later by his father, who one day went into a diabetic coma and emerged having lost his memory.
“He started hallucinating,” King said. “I don’t think any child thinks about the possibility of something like this happening.”
King’s grandfather on his father’s side had Alzheimer’s. His mother’s side has no history. Her identical twin sister shows no signs.
His father has 13 siblings. He’s in the middle and is the only one with dementia.
“Overwhelmed” by it all, King and his younger brother got the power of attorney and a living trust and King began taking care of his parents’ finances.
“When this first happened, I didn’t know what to do,” he said. “I was going out of my mind. I was doing it all alone with no help from my brothers. I started feeling isolated.”
After King moved his parents into his home, he had to rekey every door to prevent his mother from straying. Prior to that, his mother wandered away and couldn’t be found for hours. King eventually found her five blocks away sitting with teenagers on someone’s porch.
“I thought I was going to faint,” King said. “That’s when I called Alzheimer’s LA to get some help and resources. They gave me 40 hours a year of free caretaking. Now my mom wears an ankle bracelet.”
As their conditions progressed, King finally had to move his father into a board and care facility because he was becoming too “aggressive.” King and his mother go to see him on weekends. King gives his father a shave and cuts his hair.
“When my father sees my mother, it’s like the clouds open,” said King, whose parents owned restaurants and taught him how to cook. “She is the love of his life.
“It’s interesting. When we are at home, she doesn’t know him. When she sees him, she knows him. When he doesn’t see her, he always asks, ‘Where’s Adalene?’”
Throughout the day there are moments when his mother knows him and moments she doesn’t. She often feels scared and will leave food on her plate for a sister she insists is sitting there with her.
“It used to kill me and break my heart to see various shifts and changes in her memory,” King said. “When it first happened, she would just cry. I felt tormented for her. I can’t imagine living and knowing one day you may not know who you are. Every minute of it was torture.”
King said initially his father was in denial.
“He didn’t think anything was wrong with him,” King said. “He didn’t accept it. My dad has an aggressive personality. He will cuss you out, scream and throw things. My mom is passive. She is always worried about how everyone feels. Living with her, I feel like I have a kid. I have to hold her hand when we go places.”
To balance his personal health, King gets up early and works out at 5:30 a.m. while his mother is still sleeping. He feeds her at 10 a.m. and gives her a shower every two or three days, something he initially dreaded but has since come to terms with.
Everything he cooks for her is out of a bowl because his mother doesn’t recognize a sandwich. Sandwiches and hotdogs confuse her.
His parents’ diagnosis has changed King’s life “tremendously.”
“The biggest change is that I have no freedom,” he said. “That’s hard considering I’m an entrepreneur. Sometimes I can’t work.”
Four days a month, King has someone take care of his mom while he takes a trip.
“I have to go for my mental health,” said King, who is third oldest among four brothers. “I realized I was starting to resent my brothers. My brothers didn’t choose to help me. I can’t afford to take care of my parents by myself. I guess I just wanted them to care.”
His advice to anyone faced with being a caregiver is to “take a deep breath and don’t internalize.”
“You’re going to be helping someone you love,” he said. “Take it one day at a time.”
Karen Mack can relate to King. The founder of LA Commons, a nonprofit known for engaging communities in the creation of public art that tells unique stories, Mack is currently the caretaker for both her mother, Viola, 92, and her father, John, 96, who still live in their Los Angeles home, although there is always someone there.
Both were diagnosed with mixed dementia in 2016. Her mother started declining in 2005. Mack’s grandmother on her father’s side died of Alzheimer’s. She’s not sure about her mother’s side.
At “almost 60,” she feels like her parents’ parent. Her Oklahoma-born father, a former carpenter for the Los Angeles Unified School District, isn’t very mobile, and, although he’s “stubborn,” he’s easy to deal with, she said.
Her Louisiana-born mother, a former teacher, gets confused when the sun goes down, a condition among Alzheimer’s patients referred to as sundowning, which often is accompanied by a lack of sleep.
Mack and her sister share the bulk of the caregiving by spending alternate nights with their parents. They have outside caregivers come to the home every day for two hours to cook, give the parents medicine, bathe and dress them and do whatever else is needed.
“It was really a struggle for them to accept getting care,” Mack said. “Independence was deeply embedded in them.”
Becoming a caregiver had never crossed Mack’s mind. Admittedly, her life has changed drastically.
“Having to sleep over there is very difficult,” she said. “My mom doesn’t sleep. I and my sister switch off. Then I have to come and do a full day of work.
“I’m trying to manage two households. I’m buying groceries, medications, [making] doctor appointments, paying their bills, doing their taxes. I do everything. It’s an energy drain.
“Also, I’m not here for my family. My house is a disaster because I don’t have the energy to clean it. I used to have a housekeeper. COVID stopped that. My housekeeper got sick.”
Mack said her productivity at work is “suffering” and her husband feels like they are in “limbo.”
“It has impacted our relationship,” she said. “It’s hard to live our life.”
Mack insists she has no regrets about taking on a caregiver role. She appreciates the opportunity to give back to her parents.
“To me, death is the most important part of life,” Mack said. “Understand what’s happening and be present for it. Walk that journey with them until they walk through the door.”
Isidra Person-Lynn has been the main caregiver for her 95-year-old mother-in-law for six years. Her mother-in-law has suffered numerous mini-strokes and has dementia. She is the last survivor of nine siblings, all of whom had dementia.
Person-Lynn, whose own mother and grandmother had dementia and whose husband’s father had dementia, never anticipated having to be a caregiver, but very quickly had to learn because she said there was no alternative. An outside caretaker comes for about five hours a day.
Person-Lynn, whose father’s side doesn’t have dementia, said due to the overabundance of the disease in her family, she is “careful about sugar, salt and other things that can trigger other things in my body.”
Mentally, it takes its toll on Person-Lynn who “can’t go anywhere” because she doesn’t “have a backup.”
Her days are filled with bathing, feeding, dressing and watching her mother-in-law who enjoys watching television and eating ice cream.
“I’m not as good at this as I thought I would be,” Person-Lynn said. “The shower isn’t easy. She slips out of my grip. It challenges your skillset. She is only 83 pounds, but that can be heavy, especially when she’s wet.”
Her mother-in-law can still feed herself and use the restroom, but little else.
To stay healthy, Person-Lynn started taking walks.
“It’s hard to put on clothes and go out for a walk,” she said. “I’m tired all the time. You feel a commitment. You don’t want to resent. I want to be here. I have to keep reassuring her that she’s not a burden.
“She always says, ‘I don’t want to be a burden.’ She’s not. I always tell her, ‘I’m honored to take care of you.’”
Yvette A. Jackson, a licensed clinical social worker, remembers the moment she realized she was no longer mentally her mother’s daughter, but had instead become her mother’s mother.
“She said, ‘I’m trying to dress myself, but I’m losing my mind,’” Jackson said. “She couldn’t do anything for herself. She became my responsibility and had to have consistent coverage.
“This was happening while I was going to USC working on my master’s in social work. I was a single parent and now had to be responsible for my mother. I needed to get help.”
Jackson had someone come in to bathe and dress her mother and take her to daycare.
She also received help from her three adult sons, who spent quality time with their grandmother who started showing signs in 1995 when she was 75. She died at 84.
After her experience, Jackson established the Caregiver Chronicles, developed as a directive on caregiving. It’s an eight-week, 16-module, step-by-step complete walk-through course on caregiving. The program has five options that run from three private consultations to 19 courses, which includes six private consultations — all for nominal fees.
“I started the program because after being a caregiver for my mother for nine years, I realized there were many people who are caregivers who have no clue what to do,” Jackson said. “When it first happened to me, I was one of those people. It can be a struggle, especially if you work.”
For those who have no choice but to work, Sara Mikael of Alzheimer’s LA said if you can’t afford to pay someone out-of-pocket, there are some options for bringing in someone to be a caregiver.
“There is a government program called “In Home Support Services,” which offers free in-home caregivers for people who have Medi-Cal,” Mikael said. “To qualify for Medi-Cal, one would need to be low income.”
Mikael said if a person with dementia or their spouse is a U.S. veteran, they can also receive a caregiver in the home for free.
In the event someone doesn’t qualify for Medi-Cal, Mikael said they can contact Alzheimer’s LA (alzla.org) for help and guidance on how to apply for Medi-Cal.
Alzheimer’s LA is hosting a free virtual course for family members who are caregivers for someone with dementia. The course will include information on the disease, its stages, and gaining a new appreciation for the role. For information on dates and times, please contact Mikael at (323) 451-2699.
This article was produced as a project for the USC Annenberg Center for Health Journalism California Fellowship.
Darlene Donloe is a freelance reporter for Wave Newspapers who covers South Los Angeles. She can be reached at firstname.lastname@example.org.
[This article was originally published by Wave Newspapers.]