By D. Kevin McNeir
Special to the AFRO
KMcNeir@afro.com
According to recent data published by the Alzheimer’s Association, Greater Maryland Chapter, more than 7 million Americans are living with Alzheimer’s Disease. This number leads to another 12 million people, tasked with providing unpaid care while also keeping up with their own daily roles and responsibilities.
The ever-increasing cost of care as well as the unpredictable burdens placed on caregivers, continues to impact the financial, physical, spiritual, and mental well-being of both those suffering from the disease and the family members and close friends who help them through it.
Unfortunately, many families are ill-prepared for the cost associated with caring for those with Alzheimer’s and other dementias, which continues to skyrocket and is estimated to total $384 billion in 2025. By mid-century, experts believe the cost will soar to nearly $1 trillion, according to the Alzheimer’s Association.
And while the spotlight tends to understandably be on those whose lives are changed forever because of dementia, equal attention should be given to the caregivers who step forward to provide care, safety, love, a semblance of normality and so much more.
Baltimore City resident Shelette Owens, 54, whose husband Steven, 63, was diagnosed with younger onset Alzheimer’s in 2016, said the road she has traveled as a caregiver was at first, a lonely one.
“I recently had to put him in a care facility because I just couldn’t manage things anymore – feeding him, wiping up feces, dealing with his mood swings– including his anger outbursts. Most of the time, he doesn’t even recognize me anymore,” said Owens. “In the beginning, I was always depressed, anxious, isolated and burned out. I barely slept because I was afraid he might wander outside or fall. Just getting him into the car was a major task.”
Still, Owens said what was most overwhelming in the beginning was feeling so alone.
“Most of our friends stopped coming around,” she said. “They weren’t even there for me to talk to so I could share my feelings and fears. As his disease progressed, fewer and fewer of our friends came around or even called.”
Soon, she found herself in need of occasional breaks. Owens also longed for a shoulder to cry on. Neither of those things ever materialized.
“I was forced to push my feelings aside because we had bills to pay,” she said. “We were a middle-class household, so we didn’t qualify for assistance. I knew I needed to take better care of myself but there was so much to do and so many roadblocks.
“I wasn’t running on fumes – I didn’t have any fumes,” she said. “I was a wreck – physically and emotionally. Reaching out for support and joining a local group of other caregivers saved my life.”
Experts and caregivers agree – get help early and often
Marlyn Massey, diversity and inclusion program manager for the Alzheimer’s Association, Greater Maryland Chapter, said through consultations and from comments shared by caregivers, she has learned that one thing never changes: caregiving is hard.
“Many caregivers experience bouts with depression which often lead to feelings of stress, guilt, anger, sadness, isolation and then more depression,” Massey said. “It’s tough – very tough.”
She said if a caregiver wants to successfully handle the daily load, they must take care of themselves first.
“We advise people to put on their safety belt first so they can care for others. It’s also important to become educated about the signs of dementia so the disease does not progress before families have sought medical care and become familiar with the resources available in their community. Maybe you don’t feel like you need a therapist or a support group. Still, I say, don’t knock it, just try it.”
It’s the little things that help caregivers make it through the day
In 2017, Etolia Biggs, 59, was enjoying the freedom that comes as a single woman without children. But when her mother, Eva Biggs, 84, who was then living in a small town in North Carolina, was diagnosed with Alzheimer’s, she knew her life would never be the same.
“It was a battle because my mother was used to doing things on her own. But after she became lost one day, we had to take her car keys from her. That was traumatic,” she said.
Etolia moved her mother to live with her in Owings Mill, Md., in December 2021, selling her townhouse and buying a condominium so that they’d be on one level.
She said assuming the task as the primary caregiver was more than surprising – it was a “shocking experience.”
“I have an older sister who lives nearby and helps out, but my mother was living with me, and I simply did not realize what I was getting into,” she said. “My mother had behavioral challenges which was something we had never seen. By the spring, I felt so isolated – like a kid with their face pressed against a window, wanting but unable to go outside and play. I couldn’t do any of the things I once did and which I had taken for granted. Even going for a bike ride was impossible.”
Etolia found the answers she had long sought after she joined a circle of Black women caregivers based in the Baltimore area. She also became an advocate for the Alzheimer’s Association and often goes out to share her story to encourage others.
“I was never suicidal, but the pressure was immense, and I had tried just about everything,” she said. “It took a while but I eventually found a Black therapist – someone who I felt would understand the nuances and challenges of being a Black woman. I also joined the BINTI Circle – a group founded by a woman who after traveling to Swaziland, returned with many of the strategies women there use to support one another. It’s been fantastic and we’ve grown from 40 women when I joined in 2021 to several hundred today.”
Etolia said the circle members talk about everything and share strategies they’ve used as caregivers.
“I realized that I needed to care for myself first if I wanted to care for my mother and handle all the things that she could no longer do on her own. With other women around me– all of them caregivers– I discovered that there are all kinds of resources out here if we take the time to look for them, to ask for them. You don’t have to do it alone. In fact, if you try, you won’t survive.”
Great Job D. Kevin McNeir & the Team @ AFRO American Newspapers Source link for sharing this story.
