S.E. Williams | Executive Editor
“Rocked me in your wooden chair, always felt your spirit there . . . This is not the memories; this is what you mean to me . . .”
These lines are from a song written by local artist, BerniE, in tribute to his mother, Floncy Mae Edmonds, who succumbed to Vascular Dementia in August 2019.
In recognition of National Family Caregivers Month, BerniE recently spoke openly with IE Voice and Black Voice News about his beloved mother, his family, and their journey across generations with this debilitating condition.
He hopes by sharing his story it will uplift and encourage others currently travelling a similar path, bring comfort to those who took this journey before him, and help educate the community about this life altering illness and its impact on the African American community.
He was inspired to write the song “I Care,” as part of his healing process in the wake of her loss. In addition, he was inspired to write the associated video treatment bringing to life the words of the song.
“So many people have been touched by it, he said. “We can’t touch each other these days and I want this to be the biggest virtual hug anyone has ever received. That is why I put it out during Family Caregivers Month. I want it out there.”
Raised in Los Angeles in a close knit family of three brothers and one sister — who passed away at an early age — BerniE described his mother as a woman who was very active in her church and also as someone who was very much aware that as one aged it was important to stay active.
“She was always trying to do something,” he recalled with affection. “Line dancing, aerobics and several different things to try to stay fit. She played a lot of solitaire, a lot of games. She wanted to exercise her mind.”
To help others understand why she placed such an emphasis on these things, BerniE thought it important to back-up a generation and share about his maternal grandparents.
His grandmother suffered a stroke very early, and dementia as well. He believes that prompted his mother to really be cognizant of the impacts of hypertension and high blood pressure.
“As a young man, I would notice my mom was really busy and she would do all she could for my grandmother. My grandfather was old-school, and we would always go by their house when we went to church on Sundays and other days as well. We lived on the other side of town.”
With his grandma being wheelchair bound, he noticed many times his grandma’s clothes would be a little disheveled. It seems BerniE was a caretaker from the start.
“I, not wanting to be a hairdresser or anything like that; would say to myself, I’ll be doggone if my grandmother was going to look any less than that she was taken care of.”
Although he did not know anything about hair, he explained, “I would brush her hair and help her out. And, my grandfather would cook soup. He was always the breadwinner and she was the cook in the family. Yet, we managed to hold it together.”
Although he was a young kid at the time, he did what he could to make his grandmother comfortable, noting that, although she was coherent, she could not help herself because of the stroke.
“After we would get her together, grandpa and I would go out to the porch and with his 6th grade education, he educated me on property investments, he owned half the block. He was a valiant man, a very proud man. He always did all he could.”
BerniE’s mother and uncles would come over and help as well. Working together as a family was something they did well; as evidence, when he lost his beloved sister who left two young children, one nine months and the other only two years old, the family stepped in to care for them.
“We all got together. We worked together and we supported each other.”
An Unexpected Turn of Events
Fast forward about five years after his grandmother’s stroke. BerniE was visiting his grandparents and spending time with his grandfather who was teaching him math or some other subject.
“He was just really brilliant,” he declared. Later, that day, his grandfather later left for the store.
“I noticed he did not come home for a little while, so I was quite concerned. When he did not return, I didn’t know what to do. I was a young kid still, not old enough to even drive.”
After a while however, he received a call on the home phone. “I answered. It was the California Highway Patrol (CHP) and they asked if Isaac lived there?” When BerniE responded, yes, they said, “Well, he can’t find his way home.”
CHP brought his grandfather home that day.
“Since I couldn’t drive, we had to wait for somebody to get his car.” As a result, the family had to take his grandfather’s car keys and, since he was the primary caretaker of his wife, “We had to bring somebody else in to help out. We again banded together as a family,” BerniE explained.
A Hard Reality
Ninety percent of all cognitive impairment cases can be attributed to four types of dementia beyond Alzheimer’s, the second most common form is Vascular Dementia.
There is a growing body of evidence suggesting African Americans may have a greater risk of various forms of dementia compared to Whites. Yet knowledge about diagnosis, mechanisms, management and treatment of the disease has historically been based almost exclusively on studies of Whites.
Several factors could partly explain the elevated risk of this disease in African Americans.
The American Heart Association reports, “African Americans have higher rates of cardiovascular risk factors such as hypertension (high blood pressure) and diabetes, which are also risk factors for Alzheimer’s and Vascular Dementia. Hypertension over time may damage the blood vessels in the brain, which can starve the brain of oxygen and vital nutrients for the brain to function properly. Diabetes also affects how well the brain uses glucose, its main fuel source. These changes in the brain can cause lower scores on cognitive tests and contribute to the elevated risk.”
There is also a genetic factor being explored as well as a separate theory suggesting African Americans may be especially vulnerable to the wear and tear associated with chronic stress due to factors such as socioeconomic status, discrimination, or psychological stress.
The organization Cognitive Vitality recommends seven steps for brain health including eating a healthy diet, sleeping well, exercising, alleviating stress, being social, continuing to learn and managing chronic illnesses.
Recognizing the Illness
Years after the loss of his grandparents, BerniE lost his father. Concerned about their mom living alone in Los Angeles, he and his brother — who, by then, lived in Moreno Valley — encouraged their mom to move to the inland region. She resisted however, not wanting to leave her home and neighbors. They did not push the issue but soon noticed some concerning changes in her behavior.
“She had retired and was doing volunteer work for Kaiser. She was banging her car up quite a bit, putting dents in it. She was very particular about her car and when we asked her about the last incident she said, ‘I think that rail just came right out in front of me.’”
With his brother being a CHP officer, they decided it was time to take some kind of action. “So, we sat her down and said, ‘Look, we are going to have to take your keys.’”
They suggested she begin using Dial-a-Ride and she did, until one day they received a phone call saying, “We have a lady named Floncy, who is kind of disoriented.”
That was the moment he and his brother knew they had to take control. “It was so hard because she was such an independent woman,” he admitted.
A Role for Legislators
Although BerniE expressed respect for HIPPA, the 1996 Health Insurance Portability and Accountability Act that created national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge, he hopes to work with legislators to create some type of modification to the law allowing for someone in the family to be alerted when their parent is diagnosed with Vascular Dementia because so little is known regarding the time frame from diagnosis to how soon things can begin to decline.
This is particularly relevant if a parent is living alone “when they really should not be at that point. It is pretty much a box that needs to be checked saying, look, somebody needs to take over making decisions.”
Regarding his mother, “She did not communicate her diagnosis. We came over to her house and noticed she was kind of blasé. Any other time, if she were on point, she would not let us anywhere near her medical records. But my brother and I just kind of started going through her records and we also found out she had opened the door to a couple of strangers.”
“At that point, my brother still was not convinced she needed to be moved out and we started arguing back and forth about it.”
The brothers eventually compromised. Over time, they did all they could to honor her wish for independence including the addition of cameras around the house, medical alert devices, setting alarms for her medication; but, eventually concluded she could no longer live alone.
“We found a beautiful care facility for her in Moreno Valley.”
Transitioning his mom to the facility was a careful process. They took her for several visits before making the final placement so she could become familiar with the facility, staff, other residents and the care center’s routine to help make the move less unsettling for her.
He further noted how important it is to remain visible. “You need to be present. [The employees there] need to know you, and you need to show up at varying times. That way, you kind of keep people on their toes.”
“I call it that because that is what it was, the visit.” He stressed this is because you are there just to give them all the love you can. “This journey — it is a journey, can be very, very heavy. We have to understand the stages they are in.” There were times, BerniE recalled fondly, when his mother could be very coherent. “We would have conversations.”
As an artist, he completed a series of paintings which includes one image of how he visualized his mother’s moments of clarity called “Conativity.” See complete book of paintings here.
“There would be times the neurons would be shooting though her brain and she would be really on point, answering questions right away and asking me questions about ‘do you remember this or that?’” BerniE recalled. “It was really a process.”
Regarding his visits to his mom, he stressed how dealing with things we cannot control places us in a vulnerable state. “Make sure the visits are very light-hearted, that you accommodate them and not yourself. You really have to make this journey light and peaceful. You can go to visit with a mindset of ‘woe is me,’ or ‘woe is my loved one,’ or you can make it light and peaceful.
“I made these bags called, Believe. I would leave a Believe bag there each time I visited. I would take the empty bag and bring back a full one. She looked forward to them. ‘What do you have for me today,’ she would ask.
He filled them with unsweetened cookies and candies she could eat and a toy like a stuffed dog or doll, “Something we could look at and talk about. Just light-hearted things,” he affirmed. “I wanted her to look forward to having some fun.” His objective was not to just sit there looking at her being sick and worrying about her knowing he could do nothing beyond “making sure the doctors are on top of their game and the nurses are on top of their game.”
Self-Care and Learning from the Journey
As caretakers, it is also important we take care of ourselves. BerniE said he prayed and stayed in a spiritual mindset and was accepting of God’s plan.
“You pray for healing, but realize this is a degenerative disease, it is a declining process; but hopefully there is a medication, a treatment, something that can prolong the quality of her day.”
The second part of self-care for him was to remain in a positive mindset, understanding and realizing that worrying about it did not serve either him or his mother.
“As they say on the airplane, you better put this oxygen over your face first and then you help the other person. My oxygen was peace of mind. I prayed, Lord, I trust you. So, when I visited, I would have that smile on my face and that playfulness in my heart. We played around a lot. I tried to bring that to the visit—not my worry. People can sense that.”
He said he came to realize worry was not going to change anything in that moment. “Perhaps when you get home you can breakdown, but right then and there is not the time for you to do that.”
The Long Goodbye
“We surrounded her and tried to make sure she had the best of care and tried to engage with her while she was yet coherent enough to have dialogue. We wanted to make sure we had her speak as much as she could and utilize her motor skills as much as possible.”
His mother had a ‘Do Not Resuscitate’ order BeniE and his family were made aware of while she was coherent.
“It was not a hard discussion,” he responded when asked about their interaction in this regard. “It was a loving discussion because you want to do what is necessary to ensure you are making the right decisions. I know some people who will override that and do what they want to do, but we have to realize the person [being cared for] is suffering and in a condition that they wouldn’t want to be in.”
He asked rhetorically, “Is that prolonging for us or for them?”
“My mom was a woman of faith,” BerniE added. “We knew to be absent from here was to be present with God. She believed that, and we believed that. It was kind of liberating in a way.”
“When it came to the point that she stopped eating we had her on light medication so it would not be so painful, and more peaceful. We gave her food as long as she held it down, but when she no longer ate, we allowed the process to take its course. We just allowed her to transition on her own.”
BerniE remains active in the fight against Alzheimer’s and Dementia. Earlier this month he shared the “I Care” video during the 16th Annual Pythias A. and Virginia I. Jones African American Community Forum on Memory Loss where attendees discussed brain health and strategies for reducing the risk of cognitive decline. It was very well received.
He is also especially focused on reaching out to Millennials regarding this important health issue.
“I would like to challenge millennials to post their version of ‘I Care’ on TikTok, Instagram, Facebook and Twitter to open up awareness, spread the word. Sing this and hashtag a shout out to someone in their family who has experienced Alzheimer’s or Vascular Dementia.”
You can visit BerniE’s website at icarealz.org or reach out to him on social media via any of the following platforms: Facebook: https://www.facebook.com/icarealzbernie; Twitter: @icarealz; Instagram: @icarealz; and/or TikTok: @icarealz. You can also link to his current on-line art exhibit “Rameniement” which earned him a Special Recognition Placement in the online gallery LightSpace and Time.
S.E. Williams is editor of the IE Voice and Black Voice News.