Our Journey with Caregiving
Our caregiving journey began when Mama was in the early stages of dementia. My dad was still alive at that time, although he had his own struggles with Parkinson’s disease. Our parents lived in a little cottage in the country. Wayne and I, and my sister, Peggy took care of everything required to care for parents whose abilities were diminishing.
This went on for several years until one day our daddy died from a massive stroke. Mama couldn’t stay alone, so we took her home to live with us. She was at a point where she couldn’t remember who we were, but somehow knew we were ‘her’ people and trusted us.
Caring for someone with dementia was new
We loved having Mama live with us and began looking for information about dementia and how to best care for someone in her condition. The only thing we could find was a medical book that gave a clinical description of dementia. That was no help. So, we decided to care for her in a way that would provide her with the most joy and quality of life so she could finish well.
Daddy passed away in 2006, and Mama ran off to be with Jesus in 2016, so it was a bit of a journey. Though exhausting at times, we loved it. During this time, my sister also played a large part in Mama’s care.
How we met Venitra
One day, we were attending an Archwell Health event. Venitra had a Frankie Mae Foundation information table set up there. As we began chatting about caring for our loved ones, we were delighted to discover that we had just met a person with a heart for caregiving like ours . We learned that they offer many services that would have made our time caring for Mama so much easier.
One of the most valuable blessings that Frankie Mae provides to caregivers is the sense of community – creating a space where caregivers discover they are not alone. Venitra works tirelessly to search for ideas and ways to help ease the load that caregivers carry. We knew immediately that we wanted to become a part of the Frankie Mae Foundation.
Not only does the Frankie Mae Foundation provide resources for caregivers, but also the education folks need. Additionally, Venitra hosts online meetings and monthly meet-ups – which are in-person events that include a catered lunch, a speaker, a fun activity, and the opportunity to visit the (free) store for supplies frequently needed for caregiving. The foundation even pays for respite care so that the caregivers can attend.
Frankie Mae Foundation’s Story
Recently, we caught up with Venitra to learn more about how this all came about. What led her to decide to step out and create what is now a vital part of the lives of hundreds of caregivers and their families. Her story began shortly after her dad passed and her Mama, Frankie Mae didn’t want to live alone. Venitra was fortunate, as an accountant, she was able to do the majority of her work from home.
It didn’t take long for her to begin noticing the little things about her Mama that were off, such as the same questions asked over and over. An additional clue came the day her Mama began accusing her of stealing. A bigger red flag came the day her Mama called from a gas station right up the street and needed directions on how to get home. Her doctor was called, and a full neurological assessment ensued, resulting in an official diagnosis of Alzheimer’s.
Learning about Alzheimer’s
At the time, Venitra didn’t know anyone else with Alzheimer’s, so she didn’t have a frame of reference for what they were dealing with. To make this work, she knew she needed to learn more. Her first call was to the Alzheimer’s Association and got connected to a support group. Then, she just happened to run into a lady at the bank who was starting an Adult Day Care. Though she did not know what an Adult Day Care was, Venitra knew her Mama needed something like that. Up until that point, a neighbor had been taking Frankie Mae to a Senior’s Program, but it was definitely not equipped for those with challenges such as dementia.
The timing was perfect – Adult Day Care was their saving grace. They were equipped to care for those with dementia, and Frankie Mae thrived at the Adult Day Care center.
Simply trying to navigate through all the stages of the disease was difficult. For example, Frankie Mae went through a combative stage. She pushed back on everything. It wore her out, it wore Venitra’s family out, and it even wore out the folks at the Adult Day Care Center. Over time, they figured out how to redirect her anger and energy.
Caregiving takes a village
Venitra’s brother and sister stepped up to help on a regular basis. They were also blessed with friends who came over once a month to hang out with Frankie Mae so that Venitra, Richard, and their daughter could get out of the house and do things. As a bonus, friends also cleaned the house and did laundry and yard work. Venitra experienced first-hand the saying that “it takes a village”.
All the help made a huge difference, but financially and emotionally all the care-related aspects added up. In spite of the help, loving Frankie Mae was exhausting. There were times when her mind was so distracted she would stay awake for over 24 hours straight – which meant, they had to stay awake as well. They tried to reason with her, but to no avail. Over time they figured out how to keep her distractions to a minimum, which allowed her mind to settle down and sleep.
Venitra’s Journey with Frankie Mae
Over time, they all settled into a new normal – expect the unexpected and roll with it as much as possible. Frankie Mae attended the Adult Day Care, and Venitra and her family did what they could. Then came COVID. The family decided to keep Frankie Mae home for her safety. By August 2021, she experienced a definite slowing down – sleeping a lot, losing weight, and not talking.
One day, when returning home from a much-needed vacation, Frankie Mae looked up at Venitra, smiled, and said, “Hey Baby”. The hospice nurse explained to them Frankie Mae was doing something called ‘Rebounding’. It happens when someone slows down, then rebounds, but inevitably they slow back down again. Sure enough, her decline returned shortly after the rebound. The day arrived when Frankie Mae passed peacefully surrounded by family.
Creating the Frankie Mae Foundation
By January of 2022, Venitra realized that caregiving was too hard to try to do alone. So, she decided to create a system of support for others who were providing care for their loved ones.
Venitra started out thinking that she would have a quarterly support group. It turned out that the caregivers attending the first meeting wanted to meet monthly. That propelled Venitra into the community to search out and become familiar with what was available. She posted on Facebook and called Adult Day Care centers. She also contacted the Department of Social Services, Hospice, Medicare, and Medicaid – anywhere she could think of to discover what resources were available. Caregivers shared what they were interested in and who they would like to hear from at the monthly meetings.
The Caregiver store came about in the late summer of 2023 when Hospice asked her if the foundation could use Depends, which is a huge expense in caregiving. Others began to donate needed supplies. They put donated items on tables at the monthly meeting so caregivers could find what they needed at no cost.
Donations also allowed her to provide the funds for respite care so that the caregivers could have someone stay with their loved ones while they attended the monthly meetups. Venitra also began reaching out to other agencies that provide free mental health therapy, food services, and other organizations she heard about to see how they could help with services the caregivers needed. It was all about networking and asking questions.
Making a Difference
The Frankie Mae Foundation has definitely made a difference in our community. Every month there are over 100 folks (and growing) whose lives are better because of it. Wayne and I try to sit at different tables during the meetups. It’s fun to meet new people and learn some of their stories. Although everyone’s story is unique, we hear the same theme over and over – they were overwhelmed, alone, and trying to do the best they could when Frankie Mae reached out with a helping hand and drew them into a village with others who understood.
When asked what advice she would give to a caregiver, Venitra says, “Though it is easier said than done, make sure you take time for yourself. Even if it’s just sitting on the porch drinking a cup of coffee and doing nothing for just 10 minutes. Take some time and breath.” She added: “Also, realize that someone else can care for your loved one just as well as you can. Ask for specific help.”
Venitra White-Dean, CDP
The evolution of the Frankie Mae Foundation is a good model for anyone looking for a way to make a difference. Not because it’s easy, but because there are caregivers everywhere who feel isolated and overwhelmed. What began as an idea became a 501c3 Foundation with a growing base of support and resources. Venitra is a ‘sparkplug’, and not everyone is wired to create a caregiving community. But, if there is something you can do for one person, you can make a difference in that person’s life. Venitra shared that she loves what she does – it’s why she does it. Even though running the Frankie Mae Foundation is a lot of work, it is rewarding. Venitra’s favorite saying when it comes to caregiving is, “You can’t pour from an empty cup”. When you attend a meetup, needs are met, friendships are formed, and stress shrinks. Smiles and laughter abound at every gathering. It is easy to see cups being filled everywhere you look.
Has your world been touched by dementia?
My book, “Finishing Well: Finding the Joy in Dementia“, is a collection of stories and tips about doing life with my Mama. May it encourage and inspire you to find joy on your own, unique journey.